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Seymour
24-06-19, 03:11
Hi everybody,

First time posting here and I apologize profusely for the long-winded narrative about my HA woes. I really need help. I've read about 300 threads on here about MS, arm and leg weakness, dizziness and so on, and I've decided that I should ask you guys for your opinions on my current situation.

Foreword: Ok so I’ve been on a medication called Enbrel for almost 7 years now, for the treatment of Ankylosing Spondylitis, a form of arthritis. Never had a single side effect, but in very rare cases (about 0,1% apparently), this medication can cause demyelination like what you see in MS or in some cases full-blown MS but this rare side effect is till controversial. But although super rare, it can happen. I've always known this fact and it's been on the back of my mind.

For the past two months, I've experienced extreme anxiety. Panic episodes that lasted for up to 48 hours with multiple panic attacks throughout, difficulty sleeping and so on. I was anxious about everything, from a reunion at work to a supper with friends. I was always feeling anxious for no specific reason.

Then two and a half weeks ago, I woke up mildly dizzy out of the blue. As the day went on it kinda got better so I thought nothing of it.

Then when I was getting in bed at night I had a sudden weird sensation in my thigh that I could describe as something like a hot flash, but cold. Not sure if it was a blood rush as my leg was bent but it felt weird. Felt like water on my leg, kinda. So yeah, some neuro feeling I'm pretty sure.

So I looked up the symptoms dizziness and leg sensation on Google and yeah... big mistake. Found a lot of stuff about MS. Freaked out completely. Lost my marbles. The next day I felt like my limbs were weak and clumsy and my anxiety level skyrocketed. I only started eating and sleeping properly two to three days ago. So I had almost two weeks of panic attacks, no sleep, almost no food and I felt weak which I attributed to MS that I thought I got from Enbrel.

I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didn’t want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldn’t present as small tingles all over that last a second but more like a whole leg tingling for hours or days. Had nothing to say about the near-constant dizziness... Only asked me if the room was spinning and I said no, more like a feeling when you get up too fast, but it lasts for hours...

She ordered complete blood tests to check for vitamin deficiencies, diabetes or thyroid problems. Everything came back fine. I broke down crying cause I felt like I had MS and no one was taking me seriously. The GP finally attributed my symptoms to extreme anxiety, tiredness and somatization. She gave me lorazepam and sent me away.

So I waited another week. Barely ate, slept using the lorazepam. My right arm and leg started feeling weak. They're not numb per se because they hurt when I pinch them but they "feel" numb if that makes sense? No tingles I just feel like they're weaker, like they hang more than my left limbs. Like they're hollow and light. I feel like they tremble easier.

I know my arm is not REALLY weak though because I can do push-ups and I can even stand on one arm in push-up position. It's kind of driving me crazy. I can still type like I'm used to but I feel clumsier, like my hands are slower.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care LOL. I've been eating again for 3 days and sleeping better but I'm still sure I have MS.

Every doctor brushed off my symptoms but I'm still dizzy for hours on end especially when standing up and moving about. I still have tingly, water drops type feelings in my legs and other places. My right arm and leg still feel very weak and tired and I can feel some twitches. So what is happening to me?

Can this really be all anxiety? I feel like I have a pretty strong case for at least an MRI but the useless GP's won't even send me for one. Anxiety, that's all they can say. My mother and girlfriend tell me the same thing and they won't hear anything about MS anymore. But I'm going crazy. I'm dizzy and my limbs feel weak and I have these sensations.

Everybody tells me that I've been anxious for so long and ate and slept so little that my body is crumbling and that it will take weeks to feel normal again but I have a hard time believing this can all be anxiety.

Do my symptoms even sound like MS? I'm going crazy.

Midnight-mouse
24-06-19, 08:52
Everybody tells me that I've been anxious for so long and ate and slept so little that my body is crumbling and that it will take weeks to feel normal again but I have a hard time believing this can all be anxiety.

Do my symptoms even sound like MS? I'm going crazy.

Hi Seymour, welcome.

You have been seen by three different medical professionals on a minimum of four different occasions, explained your symptoms and gone through the process of the logical testing. If they do not suspect MS then why (other than google) do you think that you know better? They arenít useless they are just more trained than we are.

Yes the symptoms are real, but that doesnít mean they are caused by a physical ailment. You havenít been sleeping and eating, your anxiety has been through the roof, not to mention having yourself convinced that you have MS, all of this has a huge impact on the body that can and most often will last for a very long time. - Iíve been there, not with MS fears but with other health concerns before I kicked health anxietyís butt to the curb. My Ďsymptomsí included yours and some!

Positive vibes,

Mouse


Sent from my iPhone using Tapatalk

elitejcx
24-06-19, 14:32
You have ankylosing spondylitis. Its symptoms can mimic MS. My father spent the best part of 20 years thinking he had MS (and many physicians did too) until he was diagnosed with AS.

Seymour
24-06-19, 15:07
Hi Seymour, welcome.

You have been seen by three different medical professionals on a minimum of four different occasions, explained your symptoms and gone through the process of the logical testing. If they do not suspect MS then why (other than google) do you think that you know better?

Well, the fact that I have symptoms they canít explain that look like MS and the fact that it doesnít get better and that neuro exams can be good in early MS. I havenít had any actual tests for it with machines.

Arguments FOR MS:

- Long lasting dizziness episodes for weeks
- Tingly water drops/cold flashes feelings
- Perceived weakness in right arm and leg
- Feeling of clumsiness in right hand

Arguments AGAINST MS:

- No actual pins and needles
- No loss of balance or vision problems
- Good basic neuro exam
- Obsessed with MS
- Poor sleep and nutrition for two weeks (better for the past 3 days)
- No objective clinical weakness

You know when I first started showing symptoms of ankylosing spondylitis my GP put it down to anxiety too. And it ended up being an actual disease. So Iím very wary of GPs!

Midnight-mouse
24-06-19, 16:11
Well, the fact that I have symptoms they canít explain that look like MS and the fact that it doesnít get better and that neuro exams can be good in early MS. I havenít had any actual tests for it with machines.

Arguments FOR MS:

- Long lasting dizziness episodes for weeks
- Tingly water drops/cold flashes feelings
- Perceived weakness in right arm and leg
- Feeling of clumsiness in right hand

Arguments AGAINST MS:

- No actual pins and needles
- No loss of balance or vision problems
- Good basic neuro exam
- Obsessed with MS
- Poor sleep and nutrition for two weeks (better for the past 3 days)
- No objective clinical weakness

You know when I first started showing symptoms of ankylosing spondylitis my GP put it down to anxiety too. And it ended up being an actual disease. So Iím very wary of GPs!

All of the arguments for MS are very commonly found in people dealing with large amounts of stress/anxiety. They are perfectly explainable, especially when you consider the chemical effects of stress and not taking care of yourself has on the body, it definitely takes much more than three days to recover too.

I understand being wary of doctors but there has to come a point, obviously you went though doctors to get the diagnosis you have already, that youíve accepted, what made the doctors more credible when they diagnosed you with a physical ailment as opposed to a mental one? Expressing these concerns to the doctors may help them explain to you, and give you time to talk through the worries youíve been having. Plus they might have some suggestions of resources you could access for the anxiety side of things too.

Mouse


Sent from my iPhone using Tapatalk

Seymour
24-06-19, 16:43
All of the arguments for MS are very commonly found in people dealing with large amounts of stress/anxiety. They are perfectly explainable, especially when you consider the chemical effects of stress and not taking care of yourself has on the body, it definitely takes much more than three days to recover too.

I understand being wary of doctors but there has to come a point, obviously you went though doctors to get the diagnosis you have already, that youíve accepted, what made the doctors more credible when they diagnosed you with a physical ailment as opposed to a mental one? Expressing these concerns to the doctors may help them explain to you, and give you time to talk through the worries youíve been having. Plus they might have some suggestions of resources you could access for the anxiety side of things too.

Mouse


Sent from my iPhone using Tapatalk

What made them more credible was that I was sent to a rheumatologist, a specialist who knew how these diseases can present. GPs seem to think MS can only present with sudden numbness, lasting pins and needles or severe loss of balance. I mean Iím pretty sure the symptoms can be progressive?

Iíve been dealing with anxiety my whole life and it never made me dizzy or feeling weak outside of actual panic attacks, especially on one side only. I just canít believe thereís nothing physically wrong with me and that Iím going through these symptoms as soon as I get out of bed.

Every time I think I might be feeling better I get a s****y day of dizziness. My legs almost hurt when I walk too long. MS occupies my mind day and night. I canít read, I canít work, I canít socialize. All I do is paying attention to my body and analyzing. Iím so scared of having that on top of the arthritis. My gf is three months pregnant too. I just want to feel normal.

Seymour
24-06-19, 16:57
There's your answer, Seymour - I'd bet money on it if I wasn't so anxious about betting on anything these days:shades:

Well I admit that it did send me into a panic at first but I was feeling pretty good after that. But it was a trigger of anxiety for sure. I felt pretty anxious for every reason for weeks after the announcement.

Having said that, what I canít get my head around is anxiety ę burning up Ľ only one side of my body and making me dizzy and weak even when I donít feel anxious. Or maybe Iím just anxious all the time.

You know sometimes it just "feels" wrong. I know my body and I know something is off.

Seymour
24-06-19, 17:51
I just canít understand why, given my symptoms, everybody is so quick to put this all on anxiety.

I mean just the dizziness. I feel better lying down or sitting and worse standing and walking. Donít think anxiety would work that way?

Iím scared to the point of not being able to enjoy my life.

HA1989
24-06-19, 17:55
Your symptoms sound so typical of anxiety, which unfortunately shares a lot of symptoms with the illness you are afraid of.

Something that caught my eye though in your post - you say the medication you are causes it in 0.1% of users.. this is the same as or even lower than that of the general population so I wouldnít read too much into that :hugs:

HA1989
24-06-19, 17:57
I just canít understand why, given my symptoms, everybody is so quick to put this all on anxiety.

I mean just the dizziness. I feel better lying down or sitting and worse standing and walking. Donít think anxiety would work that way?

Iím scared to the point of not being able to enjoy my life.

I have been unable to enjoy life due to HA for many years :( some might even argue itís worse that the fears we have. Sometimes I think so, others times not it depends how bad it is at the time

Seymour
24-06-19, 18:25
Your symptoms sound so typical of anxiety, which unfortunately shares a lot of symptoms with the illness you are afraid of.

Something that caught my eye though in your post - you say the medication you are causes it in 0.1% of users.. this is the same as or even lower than that of the general population so I wouldn’t read too much into that :hugs:

Well I might be off in my percentage but it's supposed to be very rare. Very rare until it hits you... And I've seen lots of people online who got neurological problems from it but yeah, I know, Google something and you'll find it but still... But I can't just stop taking it based on an assumption cause my inflammation will go up and I'll be in pain. If I do get MS though, then the only treatment for arthritis that works for me will be off the table so I'm pretty much f****d.

I know my symptoms are typical of anxiety during a crisis but I've never heard of such specific symptoms lingering for days and weeks even outside of panic episodes. It just doesn't feel right.

The GP told me MS presents with symptoms that are usually constant or at least last a few hours and affect a whole foot, leg or even en entire side of body. That intermittent tingles lasting for half a second that appear anywhere are not typical of MS. But my arm and leg feeling weak fits the bill I think? Since I had all my strenght during the exam she brushed that off. I feel about the same as when you bump your shoulder nerve against something and your arm gets weak. But all the time in my right arm.

Right leg feels weak too and gets tired faster than other leg. It feels wobbly.

So yeah I guess I'm crazy. Waiting for something to happen like falling down on the street or losing control of a limb so that I'll be taken seriously. I mean I WISH it's only psychological but it's hard to convince yourself of that when you have strange symptoms. Sometimes the dizziness is so pronounced that I can barely do anything that involves standing up and moving about.

Fishmanpa
24-06-19, 18:48
I just canít understand why, given my symptoms, everybody is so quick to put this all on anxiety.

I mean just the dizziness. I feel better lying down or sitting and worse standing and walking. Donít think anxiety would work that way?

Iím scared to the point of not being able to enjoy my life.

You have a well documented history of anxiety for one. That said, you also have a diagnosed illness that can mimic certain symptoms. In general, anxiety causes dozens of real physical SYMPTOMS (https://www.nomorepanic.co.uk/articles/symptoms) including dizziness. So take your real diagnosed condition, the fact you're under a lot of stress and your psychological history and your doctor is correct. Address the anxiety and you address the real physical symptoms associated with it.

Positive thoughts

Seymour
24-06-19, 18:55
Ok so I've just Googled "Enbrel and MS" and sent myself into a panic attack. :(

BlueIris
24-06-19, 19:09
Google is not your friend.

Seymour
24-06-19, 19:41
I read several articles and stories and convinced myself I had MS based on Enbrel. I just had the worst panic attack of my entire life. Hyperventilated until I almost passed out. I'm so tired of this. It's worse than the actual disease I fear. My body is breaking down and I'm being a terrible father-to-be.

HA1989
24-06-19, 19:51
Ok so I've just Googled "Enbrel and MS" and sent myself into a panic attack. :(

Bless you I know how terrified you will be right now but bear in mind there will be thousands of people on enbrel who donít have ms but obviously wouldnít go onto the internet to state this.

I have been down this rabbit hole with searches such as:
Endometriosis and ms
PCOS and ms
Chrons and ms
Alcohol and ms
Long term stress and ms
Food allergies and ms
Childhood trauma and ms
Obesity and ms
Lack of breastfeeding and ms
Growing up without pets (!) and ms
Childbirth and ms
I could literally go on for pages lol. But basically you can find that all of the above there are many many people that believe the above are what triggered their ms.. (can I note I havenít actually suffered with many of the above, but when I used to be obsessed with it I wanted to see what links there is and there are 100ís).
Most of the theories are probs b*llocks btw. Nobody knows for sure what causes it.

And on a lighter note. Itís not a death sentence. I do know people with it and you wouldnít know because they control it well with lifestyle changes/medication. A lady has had it 30 years and the only obvious thing is she sometimes needs a stick to walk with.

Oh god and I just remembered an article last year ďTAPEWORM INFECTION FOLLOWED BY GLANDULAR FEVER IS THE CAUSE OF MSĒ
Cue weeks of trying to remember if Iíd had glandular fever as I knew I had the worms (hehe) as a kid and couldnít be sure Iíd had glandular fever so I was obviously doomed. Then a ton of comments on the article like ďomg this is what I had and now I have ms!!Ē.
So all Iím getting at is if everything that there was a link to it was true, we would all have ms.

pav1984
24-06-19, 20:10
Hi everybody,

First time posting here and I apologize profusely for the long-winded narrative about my HA woes. I really need help. I've read about 300 threads on here about MS, arm and leg weakness, dizziness and so on, and I've decided that I should ask you guys for your opinions on my current situation.

Foreword: Ok so Iíve been on a medication called Enbrel for almost 7 years now, for the treatment of Ankylosing Spondylitis, a form of arthritis. Never had a single side effect, but in very rare cases (about 0,1% apparently), this medication can cause demyelination like what you see in MS or in some cases full-blown MS but this rare side effect is till controversial. But although super rare, it can happen. I've always known this fact and it's been on the back of my mind.

For the past two months, I've experienced extreme anxiety. Panic episodes that lasted for up to 48 hours with multiple panic attacks throughout, difficulty sleeping and so on. I was anxious about everything, from a reunion at work to a supper with friends. I was always feeling anxious for no specific reason.

Then two and a half weeks ago, I woke up mildly dizzy out of the blue. As the day went on it kinda got better so I thought nothing of it.

Then when I was getting in bed at night I had a sudden weird sensation in my thigh that I could describe as something like a hot flash, but cold. Not sure if it was a blood rush as my leg was bent but it felt weird. Felt like water on my leg, kinda. So yeah, some neuro feeling I'm pretty sure.

So I looked up the symptoms dizziness and leg sensation on Google and yeah... big mistake. Found a lot of stuff about MS. Freaked out completely. Lost my marbles. The next day I felt like my limbs were weak and clumsy and my anxiety level skyrocketed. I only started eating and sleeping properly two to three days ago. So I had almost two weeks of panic attacks, no sleep, almost no food and I felt weak which I attributed to MS that I thought I got from Enbrel.

I went to the doctor about 10 days ago cause I was still mildly dizzy and I have strange sensations all over like someone flicking water on me. Happens most of the time on my leg but can also happen on arms, hands, face...

The GP did a basic neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there was nothing indicative of MS so she didnít want to order an MRI. She said my symptoms didn't sound like MS cause they were very mild and also MS wouldnít present as small tingles all over that last a second but more like a whole leg tingling for hours or days. Had nothing to say about the near-constant dizziness... Only asked me if the room was spinning and I said no, more like a feeling when you get up too fast, but it lasts for hours...

She ordered complete blood tests to check for vitamin deficiencies, diabetes or thyroid problems. Everything came back fine. I broke down crying cause I felt like I had MS and no one was taking me seriously. The GP finally attributed my symptoms to extreme anxiety, tiredness and somatization. She gave me lorazepam and sent me away.

So I waited another week. Barely ate, slept using the lorazepam. My right arm and leg started feeling weak. They're not numb per se because they hurt when I pinch them but they "feel" numb if that makes sense? No tingles I just feel like they're weaker, like they hang more than my left limbs. Like they're hollow and light. I feel like they tremble easier.

I know my arm is not REALLY weak though because I can do push-ups and I can even stand on one arm in push-up position. It's kind of driving me crazy. I can still type like I'm used to but I feel clumsier, like my hands are slower.

A few days ago I went back to the same GP complaining about the same symptoms. She said I was a hypocondriac and sent me to the hospital... I ended up seeing two other doctors who did basic neuro exams and listened to my symptoms and diagnosed me with extreme health anxiety. Nobody even wants to send me for an MRI and everyone basically called me crazy. I had to see a psychiatrist in urgent care LOL. I've been eating again for 3 days and sleeping better but I'm still sure I have MS.

Every doctor brushed off my symptoms but I'm still dizzy for hours on end especially when standing up and moving about. I still have tingly, water drops type feelings in my legs and other places. My right arm and leg still feel very weak and tired and I can feel some twitches. So what is happening to me?

Can this really be all anxiety? I feel like I have a pretty strong case for at least an MRI but the useless GP's won't even send me for one. Anxiety, that's all they can say. My mother and girlfriend tell me the same thing and they won't hear anything about MS anymore. But I'm going crazy. I'm dizzy and my limbs feel weak and I have these sensations.

Everybody tells me that I've been anxious for so long and ate and slept so little that my body is crumbling and that it will take weeks to feel normal again but I have a hard time believing this can all be anxiety.

Do my symptoms even sound like MS? I'm going crazy.

Your doctor gave you their opinion and they will be far better qualified than the likes of myself. I have MS and Health Anxiety, I thought I would see if I can offer any reassurance based on my own experiences.

My own experiences of MS have been longer than a few hours. My double vision for example lasted 8 weeks then it got better. I also went numb/tingling and that was a whole leg/part of my side. This didnt last as long but was longer than a couple of days.

Everyones MS is different and someone else might have different experiences, however I thought if you heard what I experienced, then you might realise that they don't sound like yours.

Tingling is a symptom of MS but it is also a symptom of anxiety. MS is uncommon, where as anxiety is very common. One thing that would be interesting to find out is whether you experience these symptoms when you are doing something you love? For example I was worried about a mole and thought it was itching. I found that when I was playing chess, it didn't bother me. I assume that it would bother me all of the time if it was something other than anxiety.

Even if it is MS (Which your doctor has said they don't think it is), most people with MS have happy normal lives. MS can be awful, however as I say most people live perfectly happy lives.

A way I try and think about health anxiety is, that you could get hit by a car. This doesn't stop you crossing the road does it? You don't spend hours looking up car accidents? (If you do then health anxiety is the least of your worries :D) Your doctor has given you the all clear, be glad and enjoy life.

Just to mention your point about the MRI, this wouldn't give a diagnosis. They could see any scarring, however healthy people can have this, so they end up having to wait for a couple of relapses before they can confirm. My understanding is that a relapse is anything over 24-48 hours.

Hope this helps.

pulisa
24-06-19, 20:30
How kind of you to try to help Seymour when you have a confirmed diagnosis, pav. I sincerely hope there aren't any "Yes but.." responses from Seymour.

HA1989
24-06-19, 20:35
Your doctor gave you their opinion and they will be far better qualified than the likes of myself. I have MS and Health Anxiety, I thought I would see if I can offer any reassurance based on my own experiences.

My own experiences of MS have been longer than a few hours. My double vision for example lasted 8 weeks then it got better. I also went numb/tingling and that was a whole leg/part of my side. This didnt last as long but was longer than a couple of days.

Everyones MS is different and someone else might have different experiences, however I thought if you heard what I experienced, then you might realise that they don't sound like yours.

Tingling is a symptom of MS but it is also a symptom of anxiety. MS is uncommon, where as anxiety is very common. One thing that would be interesting to find out is whether you experience these symptoms when you are doing something you love? For example I was worried about a mole and thought it was itching. I found that when I was playing chess, it didn't bother me. I assume that it would bother me all of the time if it was something other than anxiety.

Even if it is MS (Which your doctor has said they don't think it is), most people with MS have happy normal lives. MS can be awful, however as I say most people live perfectly happy lives.

A way I try and think about health anxiety is, that you could get hit by a car. This doesn't stop you crossing the road does it? You don't spend hours looking up car accidents? (If you do then health anxiety is the least of your worries :D) Your doctor has given you the all clear, be glad and enjoy life.

Just to mention your point about the MRI, this wouldn't give a diagnosis. They could see any scarring, however healthy people can have this, so they end up having to wait for a couple of relapses before they can confirm. My understanding is that a relapse is anything over 24-48 hours.

Hope this helps.

This is a lovely comment to leave and hope it calms OPs terror.

I very much doubt they have MS, but the way I got out of the hell hole of fear of it was to hear positive stories and realise it doesnít affect lifespan (biggest worry of mine seeing as I have a 18 month old).

Unfortunately it was replaced by a fear of stage 4 cancer which is worse haha

Seymour
24-06-19, 20:59
Your doctor gave you their opinion and they will be far better qualified than the likes of myself. I have MS and Health Anxiety, I thought I would see if I can offer any reassurance based on my own experiences.

My own experiences of MS have been longer than a few hours. My double vision for example lasted 8 weeks then it got better. I also went numb/tingling and that was a whole leg/part of my side. This didnt last as long but was longer than a couple of days.

Everyones MS is different and someone else might have different experiences, however I thought if you heard what I experienced, then you might realise that they don't sound like yours.

Tingling is a symptom of MS but it is also a symptom of anxiety. MS is uncommon, where as anxiety is very common. One thing that would be interesting to find out is whether you experience these symptoms when you are doing something you love? For example I was worried about a mole and thought it was itching. I found that when I was playing chess, it didn't bother me. I assume that it would bother me all of the time if it was something other than anxiety.

Even if it is MS (Which your doctor has said they don't think it is), most people with MS have happy normal lives. MS can be awful, however as I say most people live perfectly happy lives.

A way I try and think about health anxiety is, that you could get hit by a car. This doesn't stop you crossing the road does it? You don't spend hours looking up car accidents? (If you do then health anxiety is the least of your worries :D) Your doctor has given you the all clear, be glad and enjoy life.

Just to mention your point about the MRI, this wouldn't give a diagnosis. They could see any scarring, however healthy people can have this, so they end up having to wait for a couple of relapses before they can confirm. My understanding is that a relapse is anything over 24-48 hours.

Hope this helps.

I truly appreciate your taking the time to answer me when you suffer from the disease I fear. Itís incredibly nice of you.

I would say the tingles seem to happen more when Iím lying down not doing much and when I am walking outside. Seems worse if Iím hot. It feels like watery tingles, not pins and needles. I donít remember having done anything I love since starting this MS scare so I couldnít really tell you.

Based on your experience, you donít think my symptoms of dizziness, raindrops tingles and wobbly-feeling right arm and leg are enough to qualify as potential MS? Outside of what you stated, where you dizzy, fatigued?

The thing is I know MS isnít a death sentence but it would mean that I couldnít take my arthritis injections anymore and that my arthritis would be let loose. Not a good prospect. Iíd be less afraid if it wasnít for that.

Thanks to you and the very kind people here. You truly do make a difference.

pav1984
24-06-19, 21:27
I truly appreciate your taking the time to answer me when you suffer from the disease I fear. Itís incredibly nice of you.

I would say the tingles seem to happen more when Iím lying down not doing much and when I am walking outside. Seems worse if Iím hot. It feels like watery tingles, not pins and needles. I donít remember having done anything I love since starting this MS scare so I couldnít really tell you.

Based on your experience, you donít think my symptoms of dizziness, raindrops tingles and wobbly-feeling right arm and leg are enough to qualify as potential MS? Outside of what you stated, where you dizzy, fatigued?

The thing is I know MS isnít a death sentence but it would mean that I couldnít take my arthritis injections anymore and that my arthritis would be let loose. Not a good prospect. Iíd be less afraid if it wasnít for that.

Thanks to you and the very kind people here. You truly do make a difference.

Those symptoms you describe are classic anxiety symptoms.

I am not a doctor and can only comment on my understanding of it.

You say that you have 5 symptoms. I am not saying that more than one attack cant happen at the same time but 5? You see where i am trying to lead you here?

Do me a favour and read about head lice... Does your head itch? Your brain is a powerful thing.

Can i ask why you wouldnt be able to treat your arthritis? Cos of the MS treatment clashing?

I am guessing that you would leave the ms drugs alone and treat your arthritis. Your doc would advise.

Lots of people dont take anything for ms.up until a few years ago in the uk the drugs were still on trial and were in short supply so lots of people went without.

I only mention the above because it sound like you have found an illness that would cause your arthritis treatment problems. Understandable that you are worried as that would impact your life.

pav1984
24-06-19, 22:05
I hope I dont come across a dismissive of your fears. I know what health anxiety does to you. I recently had a blip and some kind people on here put me straight with some cool hard logic that i was lacking. You say that you dont do anything you love since your fears started.....

Please take some advise from a fellow worrier. Get out of the house. Whenever you get the urge to google. Stop. And force yourself to do things. It will be hard at first but you will feel better for it.

I find mindfulness helps. I go to meetings every week. Basically an excuse for a drink with some pals 😁 but we do learn a lot.

Fishmanpa
24-06-19, 22:22
I hope I dont come across a dismissive of your fears. I know what health anxiety does to you. I recently had a blip and some kind people on here put me straight with some cool hard logic that i was lacking. You say that you dont do anything you love since your fears started.....

Please take some advise from a fellow worrier. Get out of the house. Whenever you get the urge to google. Stop. And force yourself to do things. It will be hard at first but you will feel better for it.

I find mindfulness helps. I go to meetings every week. Basically an excuse for a drink with some pals  but we do learn a lot.

Pav, what you're doing is the key. Nothing wrong with an occasional slap upside the head now and again but you're doing CBT and engaging in positive activities as opposed to sitting in front of a computer or phone ruminating and feeding the dragon. Everyone has blips, anxiety or not, and pushing through them, moving forward and most of all, learning how to deal with them is the way out of the dragon's cave and any difficult life situation.

Positive thoughts

pav1984
24-06-19, 22:32
Pav, what you're doing is the key. Nothing wrong with an occasional slap upside the head now and again but you're doing CBT and engaging in positive activities as opposed to sitting in front of a computer or phone ruminating and feeding the dragon. Everyone has blips, anxiety or not, and pushing through them, moving forward and most of all, learning how to deal with them is the way out of the dragon's cave and any difficult life situation.

Positive thoughts

You were one of the kind people i mentioned. A much needed slap if i remember rightly and i am much better for it. 😁

Seymour
24-06-19, 23:17
Those symptoms you describe are classic anxiety symptoms.

I am not a doctor and can only comment on my understanding of it.

You say that you have 5 symptoms. I am not saying that more than one attack cant happen at the same time but 5? You see where i am trying to lead you here?

Can i ask why you wouldnt be able to treat your arthritis? Cos of the MS treatment clashing? .

You mean that having dizziness, right arm weakness, right leg weakness and tingles would count as 4 separate lesions acting up and that it would be extremely unlikely?

pav1984
24-06-19, 23:44
You mean that having dizziness, right arm weakness, right leg weakness and tingles would count as 4 separate lesions acting up and that it would be extremely unlikely?

I am no doctor and only know what i have experienced. I have just looked online and cant find anything about more than one at once. Which should tell you something. Each and every one of your symptoms can be explained by anxiety. You have been checked by a doctor who would tell you if they were worried. To top it all off even if you did have it chances are you would live a happy normal life. If i were you i would concentrate on relaxation and anxiety fixes. Please try something for me. Set yourself a period of time where you give yourself a holiday mentally from ms. Say 2 weeks. 2 weeks will make absolutely no difference to the diagnosis. If your hand tingles just accept it is tingly and carry on. Dont even think about it. During which time concentrate on relaxation techniques. I reckon your symptoms will go once you master how to relax.

Fishmanpa
24-06-19, 23:56
Please try something for me. Set yourself a period of time where you give yourself a holiday mentally from ms. Say 2 weeks. 2 weeks will make absolutely no difference to the diagnosis. If your hand tingles just accept it is tingly and carry on. Dont even think about it. During which time concentrate on relaxation techniques. I reckon your symptoms will go once you master how to relax.

You've been diagnosed with severe HA and are posting on an anxiety forum so deep down you know the doctors are right. Treat the real illness and you treat the symptoms it causes.

Positive thoughts

Seymour
25-06-19, 00:12
I am no doctor and only know what i have experienced. I have just looked online and cant find anything about more than one at once. Which should tell you something. Each and every one of your symptoms can be explained by anxiety. You have been checked by a doctor who would tell you if they were worried. To top it all off even if you did have it chances are you would live a happy normal life. If i were you i would concentrate on relaxation and anxiety fixes. Please try something for me. Set yourself a period of time where you give yourself a holiday mentally from ms. Say 2 weeks. 2 weeks will make absolutely no difference to the diagnosis. If your hand tingles just accept it is tingly and carry on. Dont even think about it. During which time concentrate on relaxation techniques. I reckon your symptoms will go once you master how to relax.

Well Iíve read about people going numb on a whole side so one attack can encompass more than one limb, no?

You offer great advice and honesty thatís what I want to do but the dizziness makes it hard.

Thanks for talking with me I really appreciate it.

pav1984
25-06-19, 00:26
Well Iíve read about people going numb on a whole side so one attack can encompass more than one limb, no?

You offer great advice and honesty thatís what I want to do but the dizziness makes it hard.

Thanks for talking with me I really appreciate it.

Ok another angle. If it is MS you cant do a lot about it anyway. Not a huge amount you can do. The drugs only reduce symptoms quantity and severity. You can however remove triggers. Little is known about what causes it but stress and anxiety is thought to be a trigger in people with ms. So learning how to relax would be essential anyhow. So learn how to relax and it is a win win. If it is anxiety then happy days it is fixed. If it is MS then you have learnt a valuable tool in an attempt to prevent further problems. Look after your diet and exercise if possible.

Fishmanpa
25-06-19, 00:29
Well I’ve read about people going numb on a whole side so one attack can encompass more than one limb, no?

Are you cognizant of the HA pattern you're exhibiting? Reassurance is like crack to the addict. It helps a little but you always need more. You've had several trained medical professionals as well as a MS sufferer offer their opinions and experience and you're still asking questions trying desperately to validate your fears.

What are you currently doing to treat you anxiety?

Positive thoughts

Seymour
25-06-19, 01:21
Ok another angle.

Sorry I didnít mean to dismiss what you said about symptom patterns. You obviously know more about it than I do. Actually I was looking for more of that good olí reassurance that you were effectively providing. 🙂

Concerning medication, itís because the injections for my type of arthritis are known to worsen MS symptoms. But theyíre the only thing working for me so yeah, curious what my doctors would do.


Are you cognizant of the HA pattern you're exhibiting? Reassurance is like crack to the addict. It helps a little but you always need more. You've had several trained medical professionals as well as a MS sufferer offer their opinions and experience and you're still asking questions trying desperately to validate your fears.

What are you currently doing to treat you anxiety?

Positive thoughts

Yeah I know, Iím sorry. For anxiety I take citalopram but Iíve been taking it for years and it does nothing. I take the occasional Ativan and the psychiatrist gave me risperidone but it has a reputation of being a poison. Iíve started seeing a therapist last week too.

Fishmanpa
25-06-19, 01:33
For anxiety I take citalopram but I’ve been taking it for years and it does nothing. I take the occasional Ativan and the psychiatrist gave me risperidone but it has a reputation of being a poison. I’ve started seeing a therapist last week too.

That's good :yesyes: You probably should speak with your doctor about the meds. Sometimes they just crap out on you. My daughter is a sufferer and had to go through several med changes when her Zoloft crapped out on her. Between the meds and therapy, she's doing well.

Positive thoughts

Seymour
25-06-19, 03:35
Yeah I will try to move to Cymbalta or Zoloft but at this point it's just whatever. All I'd care for is seeing a neurologist who'd tell me there's no way I have MS or at least being symptoms-free so I can psyche myself into thinking I'm normal.

Funny thing is, I could get "normal" again and still have MS and have the symptoms come back with a vengeance in years. But seeing as I'm taking Enbrel that should assure a steady process of demyelination and getting worse. I guess I'll know in the next weeks and months if I'm FUBAR.

Seymour
25-06-19, 14:09
Itís been three weeks today suffering from these strange symptoms and I wonder if MS could present such relatively mild symptoms and never go into a full blown attack?

I mean itís not getting better but itís not getting worse either...

Can thinking about symptoms 24/7 contribute to having them stick around?

ErinKC
25-06-19, 15:35
It’s been three weeks today suffering from these strange symptoms and I wonder if MS could present such relatively mild symptoms and never go into a full blown attack?

I mean it’s not getting better but it’s not getting worse either...

Can thinking about symptoms 24/7 contribute to having them stick around?

100% yes, thinking about symptoms will make them stick around and get worse. I've only skimmed your thread, but all of the symptoms you're having can absolutely be caused by anxiety. These are all of my anxiety symptoms! I recently had a flair up of anxiety after a good while and had almost forgotten how physical it can be. I actually read somewhere years ago that there's an argument to be made for considering anxiety both a psychological and a physical ailment because there are so many physical symptoms.

There have definitely been times when I've thought perhaps I have MS because of all the symptoms I get: numbness, tingling, twitching, dizziness, muscle heaviness, cold and hot spots, the sensation of water pouring down my arm or leg, eye pain, etc... but these symptoms *always* pass when my anxiety does. And, honestly, I've never actually felt anxious about MS because, while I obviously don't want to have it, it's not a fatal disease. Life expectancy is slightly lower than the general population, but the leading causes of death for a person with MS are the same as everyone else - cancer, heart disease, etc...

Talk to your doctor about changing up your anxiety meds and getting therapy. I often will set a timeline for myself when it comes to symptoms that concern me. In your case, I think you should try to allow yourself to treat the anxiety first. If you get that under control and your symptoms persist, only then should you continue looking for other causes.

Seymour
25-06-19, 15:43
Hi Erin, thanks for replying!

Have you ever felt the sensation like someone is flicking water on your leg or arm? I get this all the time and it seems worse when air is blowing on me for some reason. Iíve read online about a woman with MS who had that...

Were your symptoms happening even when you felt calmer? Mine seem to come out of the blue with no logic.

Seymour
25-06-19, 18:55
Is dizziness even a symptom of MS in itself? I wish RLR still posted here!

Fishmanpa
25-06-19, 19:09
Have you read THIS? (https://www.nomorepanic.co.uk/showthread.php?42556-A-Thread-for-Newcomers-Worried-about-Multiple-Sclerosis-(MS))

Positive thoughts

Seymour
25-06-19, 19:57
I did, itís a great post.

I know I wonít find answers by asking more and more questions

Thanks everybody for your kindness and time.

Seymour
25-06-19, 20:12
Now I just had that tingly water sensation in my arm too, lol.

ErinKC
25-06-19, 20:19
Hi Erin, thanks for replying!

Have you ever felt the sensation like someone is flicking water on your leg or arm? I get this all the time and it seems worse when air is blowing on me for some reason. I’ve read online about a woman with MS who had that...

Were your symptoms happening even when you felt calmer? Mine seem to come out of the blue with no logic.

Yes, I have had that feeling you describe and yes these symptoms will often linger for a while after my anxiety has passed. I like to think that my body fills up with adrenaline and it takes some time for it to all drain out even once I've calmed down.

I'll add that I also have lower back issues so I'm pretty sure just plain old muscle/nerve stuff contributes, and being anxious makes that kind of thing flair up too because you're tensing your muscles, which irritates nerves, etc...

You've been to the doctor, who is trained to spot things like MS. My brother's girlfriend was diagnosed with MS last year and she went to the doctor with very specific eye pain and was sent right away for MRI, which confirmed the diagnosis. This is what doctors do all day. They know what they're talking about. They know how MS presents and they know what to do if they suspect it. So, having seen your doctor more than once, having them do the basic neuro exam, etc... should make you confident that this is your anxiety.

Seymour
25-06-19, 20:23
Yes, I have had that feeling you describe and yes these symptoms will often linger for a while after my anxiety has passed. I like to think that my body fills up with adrenaline and it takes some time for it to all drain out even once I've calmed down.

I'll add that I also have lower back issues so I'm pretty sure just plain old muscle/nerve stuff contributes, and being anxious makes that kind of thing flair up too because you're tensing your muscles, which irritates nerves, etc...

You've been to the doctor, who is trained to spot things like MS. My brother's girlfriend was diagnosed with MS last year and she went to the doctor with very specific eye pain and was sent right away for MRI, which confirmed the diagnosis. This is what doctors do all day. They know what they're talking about. They know how MS presents and they know what to do if they suspect it. So, having seen your doctor more than once, having them do the basic neuro exam, etc... should make you confident that this is your anxiety.

I do have ankylosing spondylitis so maybe some symptoms are caused by disc changes in spine but the fact that it happens in my right arm AND leg has me puzzled.

Seymour
25-06-19, 20:26
You've been to the doctor, who is trained to spot things like MS. My brother's girlfriend was diagnosed with MS last year and she went to the doctor with very specific eye pain and was sent right away for MRI, which confirmed the diagnosis. This is what doctors do all day. They know what they're talking about. They know how MS presents and they know what to do if they suspect it. So, having seen your doctor more than once, having them do the basic neuro exam, etc... should make you confident that this is your anxiety.

Did your sister in law only have the eye pain as a symptom?

Seymour
26-06-19, 15:30
I keep getting these tinglings that last a second or two and it seems worse when lying down.

My right arm and leg feel weak and stiff.

My life feels like a nightmare right now. Iím terrified I have MS. I canít wrap my head around the fact that anxiety could cause persistent symptoms that never ease up.

I canít talk to anyone about it because everyone is tired of it and thinks Iím a hypochondriac. Iím left here annoying everybody on this forum.

BlueIris
26-06-19, 15:37
Take a breath.

Can you at least acknowledge that your thought patterns may not be rational right now?

Seymour
26-06-19, 16:50
Take a breath.

Can you at least acknowledge that your thought patterns may not be rational right now?

Itís very hard to have all these symptoms and having everybody tell you theyíre caused by your mind. I know it can but Iíve never experienced this before.

It does not help that people were saying the same thing about my arthritis and I ended up with a diagnosis 10 minutes after I finally spoke with a rheumatologist.

I guess I donít trust GPs anymore. It feels like they give you the run around until your symptoms are so severe that they have no choice but to refer you to a specialist.

Iím really trying to stay positive and forget about MS but it really does feel like it.

I mean I know I donít have the vision problems and pins and needles and numbness so one could say "Well what DO you have that sounds like MS?" I just feel like my right side is weak and that the tingly fleeting sensations I experience are not normal.

I feel like Iím just in the early stages of MS so still functioning but I know somethingís brewing.

BlueIris
26-06-19, 17:00
This is the problem, though - it's a hard lesson to learn, but health anxiety turns your mind against you, and it can make the most ridiculous thoughts seem like self-evident truths.

Seymour
26-06-19, 17:17
This is the problem, though - it's a hard lesson to learn, but health anxiety turns your mind against you, and it can make the most ridiculous thoughts seem like self-evident truths.

Like what, in my case? I donít want to be pushy or argumentative but I feel like Iím pretty rational. I genuinely would like an objective opinion on my defective thought pattern.

BlueIris
26-06-19, 17:23
I'm not a neurologist, so I can't comment on the MS side of things. To me, a major red flag about your thinking patterns is the fact that neither your GP nor your close family believe there's anything to your fears.

I'm sorry, I'm not trying to be cruel, but I know this from personal experience - sometimes I can't trust my own brain when it comes to the things my body does, and that's when I rely on the people around me to help me out and tell me if I'm being a bit loopy.

Fishmanpa
26-06-19, 17:38
Like what, in my case? I don’t want to be pushy or argumentative but I feel like I’m pretty rational. I genuinely would like an objective opinion on my defective thought pattern.

Reading your posts and from an outside perspective, I beg to differ :lac: You have an inherent lack of trust for medical professionals that skews your perception and causes you to discount tests an medically trained opinions as well.

Then there's the very typical pattern in your responses that screams HA and you're posting on an anxiety forum.

Positive thoughts

Seymour
26-06-19, 18:04
Fair enough. But really my family arenít doctors and arenít in my body so I wouldnít give a lot of credit to what they say.

As far as medical professionals, I would trust a neurologist and I obviously would trust an MRI result. Iím just fairly certain that a basic neuro exam wouldnít reveal anything in early MS with mild symptoms. Only an MRI can confirm MS. I donít think itís unusual to have good basic neuro exams and still have MS.

As far as GPs are concerned you donít need a neurologist until you have a clear MS symptom like numbness of a whole limb or double vision. The doctor even told me sheís not sure how very early MS would present as sheís used to see it more in urgent care when the symptoms are more definitive.

Seymour
27-06-19, 01:47
Canít believe that no one is believing me meanwhile my arm and leg feel weaker and heavier every day.

BlueIris
27-06-19, 04:53
We believe you have real physical sensations, however, the anxious mind is really good at playing tricks on a person.

This is why most of us are here - to work on learning to wrangle the anxiety.

Seymour
27-06-19, 17:57
Hi all,

Iíve been having strange symptoms lately that make me think I may have MS. Iím dizzy most days, my right arm and leg feel weak and heavy and I get tingles all over but mostly in my leg.

I also noticed that when I wake up during the night, my arms and sometimes legs feel dead. Like when you sleep on them but I donít think I do? Sometimes both arms feel that way and I wake up with weak limbs. It usually gets better after I get up.

Is this a typical MS symptom? I noticed it seems better if I sleep on my back with my arms on each side and worse if I sleep on my belly.

Seymour
27-06-19, 18:08
Iím seeing my GP next week and will try one last time to have a referral for a neurologist. She knows me better than the doctors Iíve seen in urgent care and will probably take me more seriously. Sheíll probably agree to test my B12 too.

If I see a neurologist and get an MRI and everything is clear then Iíll accept the anxiety diagnosis. I mean Iím not crazy.

Obviously I donít want this diagnosis but at the same time I canít feel that way forever. I have to work and Iím going to be a father in six months.

If my arthritis medication has caused this then I want to know and I guess Iíd rather live in pain with one disease than have two of them.

nomorepanic
27-06-19, 18:43
Sounds like bad posture - I get numb arms at night because of it.

Seymour
27-06-19, 18:52
Bad posture when sleeping or during the day?

nomorepanic
27-06-19, 20:21
Bad posture all the time causing numbness at night.

nomorepanic
27-06-19, 20:23
Hi

This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Seymour
27-06-19, 20:43
Bad posture all the time causing numbness at night.

Strange.

Seymour
29-06-19, 23:34
I'm trying really hard to buy into the anxiety theory even though part of me just feels convinced I have MS. But I've read so many posts and seen videos about people with my symptoms who ended up doing an MRI scan that came back clean that I'm starting to doubt myself.

A new symptom I have is vibration in my arm, leg and groin region. Like I'm standing near a washing machine. I've read it can be a sign of MS but then again many people experience that with anxiety.

I think my body and mind are messed up. I have so many symptoms.

At night if I sleep on my belly my arms get numb somehow. I'm not even sure that would qualify as a MS symptom. Never heard of MS symptoms appearing only at night.

At this point I just hate life.

Seymour
30-06-19, 16:56
It hasnít gone away and Iím freaking out. If itís not going away then it can only be MS right? I wish I die in my sleep.

pulisa
30-06-19, 20:23
You don't mean that. It's the inability to convince yourself that anxiety is causing all the unpleasant feelings and the utter panic which sets in when all seems hopeless.

You have a hell of a lot to live for and hell of a lot of time to learn about how powerfully anxiety can take a hold of everything.

Even if you think you definitely have MS then at least read up on the tricks anxiety can play on your nervous system?

Seymour
01-07-19, 05:31
I think Iím past that point. Itís been nearly a month and my symptoms donít subside at all, plus Iíve been taking for the past seven years a medication that can cause demyelination like MS. My only hope is that I wonít get actual MS and that discontinuing my medication will stop the symptoms and allow my body to heal. About 75% of people have that outcome. The rest develop full blown MS. Itís a risk I knew I was taking but it was severely downplayed by my rheumatologist.

Now if we confirm brain lesions my arthritis meds are off the table so Iím looking at years of excruciating pain.

So yes I do mean it when I say I wish Iíd die. I canít kill myself because my mom, girlfriend and child need me but at this point Iím just tired of all the shitty cards that life deals me on a continuous basis.

BlueIris
01-07-19, 05:54
You need more help than a bunch of strangers on a forum can provide you, in that case.

I strongly recommend that you seek the services of a trained mental health professional as a matter of urgency.

Seymour
01-07-19, 06:05
Oh Iím seeing one. But if I gotta have arthritis and MS, no amount of counseling will bring me back. Anxiety and illness have won the battle.

pulisa
01-07-19, 08:18
You haven't been diagnosed with MS. You just assume you have it. There's a big difference.

Are you having tests for MS? Has any doctor suggested that you should be tested for MS? It's a long and complex diagnostic procedure.

Fishmanpa
01-07-19, 13:37
Oh I’m seeing one. But if I gotta have arthritis and MS, no amount of counseling will bring me back. Anxiety and illness have won the battle.

What does your therapist think about reassurance seeking on an anxiety forum?

Positive thoughts

Seymour
01-07-19, 18:04
You haven't been diagnosed with MS. You just assume you have it. There's a big difference.

Are you having tests for MS? Has any doctor suggested that you should be tested for MS? It's a long and complex diagnostic procedure.


So far the two doctors I've seen at the hospital brushed it off as anxiety but since my symptoms have gotten a bit worse and are still present I think that my GP that I'm seeing Thursday will want to at least refer me to a neurologist.

I know I haven't been diagnosed but I'm dizzy 80% of the time, my legs are weak and tire easily, I get muscle twitches, my arms go numb at night and I have these feelings like someone is flicking water on me and other strange sensations like vibration in legs and arms.

If you add to that the fact that I have arthritis of the spine and that I've been taking for years an injection that can cause demyelination, then I feel like I'm a pretty clear cut case of MS or at least an MS-like syndrome induced by my medication.

There's just so much you can blame on anxiety and I know my body. When I first started showing symptoms of arthritis everyone brushed it off as anxiety too, and I ended up being right.

pulisa
01-07-19, 19:46
So if these AS meds cause demyelination why aren't you being routinely scanned for any signs of spinal lesions which would indicate the onset of MS? Especially in view of your symptoms? Why are doctors brushing it off as anxiety if you are at more risk of MS?

Seymour
01-07-19, 22:32
So if these AS meds cause demyelination why aren't you being routinely scanned for any signs of spinal lesions which would indicate the onset of MS? Especially in view of your symptoms? Why are doctors brushing it off as anxiety if you are at more risk of MS?

Probably because I haven't seen my rheumatologist (scheduled in September) yet but also because the rate of occurence of this side effect is severely downplayed by doctors and the pharma industry.

They say people who develop MS after taking these meds "probably would have gotten it anyway"...

pulisa
02-07-19, 08:24
That's hard to believe. Do you honestly think that something like this would be "hushed up"?

Seymour
02-07-19, 18:34
It's not "hushed up" because it's on the leaflet that comes with the medication. There's research on the topic too. It's just downplayed. Doctors say it's a "very very rare" side effect and that neuro symptoms generally resolve following cessation of the drug, but there are a lot of people just on the spondylitis forum that have had neuro problems with these drugs. Doesn't seem so rare but people trust their doctors. Also I'm not sure doctors report all cases of neuro problems from these drugs. Of course it's going to be "very very rare" if the cases aren't reported...

BlueIris
02-07-19, 18:37
Do you not see how irrational you're sounding?

MyNameIsTerry
03-07-19, 02:03
Foreword: Ok so Iíve been on a medication called Enbrel for almost 7 years now, for the treatment of Ankylosing Spondylitis, a form of arthritis. Never had a single side effect, but in very rare cases (about 0,1% apparently), this medication can cause demyelination like what you see in MS or in some cases full-blown MS but this rare side effect is till controversial. But although super rare, it can happen. I've always known this fact and it's been on the back of my mind.

For the past two months, I've experienced extreme anxiety. Panic episodes that lasted for up to 48 hours with multiple panic attacks throughout, difficulty sleeping and so on. I was anxious about everything, from a reunion at work to a supper with friends. I was always feeling anxious for no specific reason.


Apologies if I have missed this as I was skimming your thread about the med but were you already under lots of stress/anxiety when the symptoms all started?

Like you say, very rare at less than 0.01%. Dizziness however is common at 1-10%. Paraesthesias also get a mention which could account for the strange water drop feelings.

Something that is interesting when considering your focus is other side effects of this med. It has some in rare or frequency not reported that are more serious than MS (and most likely have some of your symptoms) but are they bothering you?

Anxiety already has many of these symptoms in it's arsenal but if I wonder whether introducing the effects of this onto nervous system mimics side effects of the drug or whether the pressure on your body even unbalances it to the point of drug side effects appearing? How can you rule these out?

MyNameIsTerry
03-07-19, 02:09
Like what, in my case? I don’t want to be pushy or argumentative but I feel like I’m pretty rational. I genuinely would like an objective opinion on my defective thought pattern.

But why are you here? Are you someone who already suffered from mental health disorders prior to all this or is it since this has happened that you have dug yourself into this hole and come here?

Why do I ask? Because in my time here I'm yet to come across anyone who came here who actually had xyz. They head straight for the correct support forum for the disease/disorder/condition and get support with the anxiety (which will often be normal range for a physical condition) too. I have met people who suffered mental heath disorders who ended up with a serious physical condition although none so far who actually worried about having it before they found out.

MS sufferers don't come here. Cancer sufferers don't come here. They may come here for more specific mental health support, as physical conditions don't mean you understand mental health even when all of them go through varying levels of stress & anguish, but these people are accepting of their other conditions and not chasing the typical patterns of a the HAer (which you are).

(my first question isn't meant to be a challenge, it's merely to understand more about you and your mental health history prior to all this because we often see people come here who don't have anxiety disorders who are just upset over an exposure event e.g. HIV/AIDS).

Seymour
04-07-19, 02:47
Yes, I have a history of severe anxiety and yes I was under a lot of anxiety when symptoms started. I heard that intense stress can trigger MS episodes.

I also have a history of auto-immune disease as you know.

pulisa
04-07-19, 08:34
I think it's more that intense stress can trigger symptoms which mimic MS episodes.

MyNameIsTerry
04-07-19, 14:38
Yes, I have a history of severe anxiety and yes I was under a lot of anxiety when symptoms started. I heard that intense stress can trigger MS episodes.

I also have a history of auto-immune disease as you know.

Therefore isn't there the possibility that since what you are experiencing are anxiety symptoms then this could be the real reason?

Are you focusing on MS because of the med you are on?

Intense stress can trigger MS episodes or trigger you starting with MS? Wouldn't the former be for those already diagnosed? Therefore what connections are made between the drug leading to MS and the addition of stress? Do they have any connection? If not, aren't they distinct?

Seymour
12-07-19, 21:40
As some of you may or may not know, Iíve been having symptoms similar to MS for the past five weeks. I actually bothered my doctor so much that Iím on the waiting list for a brain MRI so thatís that. Symptoms have been: constant dizziness/lightheadedness, right arm feel weak, legs feel sore and heavy and some intermittent tingling that comes and goes after a few seconds. Iíve seen five doctors so far who said these werenít specific MS symptoms but the last doctor, my rheumatologist, agreed to do the MRI after I had called her three times... Probably so I stop calling.

ANYWAY! So for the past week or so Iíve been having spasms/fasciculations in thighs, lips, face, calf and lots in my right arm. My right arm actually feels tight and I can see a muscle in my forearm going crazy multiple times a day. I try to reason myself saying itís the result of weeks of anxiety and researching illness all day and that my body is burnt out. I donít have a relaxing sleep as I fall asleep scared of waking up with new symptoms.

So now that I have fasics and spasms I have pretty much confirmed in my head that itís either MS or my new beast ALS. Iíve read a lot of contradictory information online ranging from "twitches in ALS only occur after more obvious symptoms" to "fasciculations can be the first sign years before actual disease" Same thing for MS. Fasciculations can be a sign of MS or in other sources not at all a presenting symptom. I also wondered if holding my phone and searching the internet all day could be the cause of my right hand/arm tightness and twitches.

Iím probably seeking reassurance but does anybody here have anxiety-induced twitches? Should I worry about ALS/MS even more? Iíve read the sticky thread but have found a lot of contradictory information online. Itís just all over the place.

I think my mind and body are completely burnt. Living with the thought of illness 24/7 is like poison.

Fishmanpa
12-07-19, 21:58
does anybody here have anxiety-induced twitches?

Scroll to the bottom of the page or do a search and you'll find thousands of similar posts.

Positive thoughts

venusbluejeans
12-07-19, 22:03
This is just a courtesy reply to let you know that your thread was merged with another of your threads.

Please when posting on similar topics add it onto your previous post rather than starting a new one.

It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.

Emmz

Seymour
12-07-19, 22:56
Scroll to the bottom of the page or do a search and you'll find thousands of similar posts.

Positive thoughts

Yeah I guess. Itís just that stuff adds up you know. My tight fasciculated arm scares me.

Seymour
13-07-19, 01:52
I even have spasms in my lip, chin, eye and forehead. It's crazy. Anxiety or a lesion the size of a bacon strip?

MyNameIsTerry
13-07-19, 03:25
I’m probably seeking reassurance but does anybody here have anxiety-induced twitches? Should I worry about ALS/MS even more? I’ve read the sticky thread but have found a lot of contradictory information online. It’s just all over the place.

Yep, and I know tons on here who have too. There are many threads about it all, many are ALS/MND threads too and they are still around and don't have it.

I've found anxiety twitching is worse at worse stages of anxiety and as you calm down overall they reduce greatly. No more legs flying out of bed or pulsing twitching for me as I'm well past that stage now. But if I find myself having a rough time with increased adrenaline I can still get them. I may get the odd Hypnic Jerk too when in bed.

Others on here I've talked too have said the same about overall levels of anxiety. The same can easily be said for OCD as obsessive-compulsive cycles and intrusive thoughts intensify when more stressed in general.

Some have talked about facial twitching with anxiety, some where it's been eyes. I've always been more limbs and the lower back thing too. I did also have periods of nerve spasms and I can say these are more frequent than ever before my anxiety started. Again, worse periods of anxiety tend to be there when they appear.

Seymour
13-07-19, 14:53
Thank you for taking the time to read and answer. My symptoms started on June 4 so I guess if it was ALS Iíd have some pretty obvious weakness by now?

Fishmanpa
13-07-19, 14:59
My symptoms started on June 4 so I guess if it was ALS I’d have some pretty obvious weakness by now?

Take the question mark away and it becomes a statement of fact as opposed to seeking more reassurance ;)

Positive thoughts

Seymour
13-07-19, 16:57
But is it an absolute fact though? I think ALS can be slow at onset?

Fishmanpa
13-07-19, 17:17
But is it an absolute fact though? I think ALS can be slow at onset?

You have a severe case of "yeah but" disease I'm afraid :(

Positive thoughts

Seymour
14-07-19, 17:05
You have a severe case of "yeah but" disease I'm afraid :(

Positive thoughts

I guess I do but I donít know that much about ALS. Just asking.

Fishmanpa
14-07-19, 17:17
I guess I do but I don’t know that much about ALS. Just asking.

THIS (https://www.nomorepanic.co.uk/showthread.php?196071-ALS-and-why-you-DON-T-have-it!) is all you need to know and you don't have it!

Positive thoughts

Seymour
16-07-19, 17:46
Feels like Iím getting slightly better. Symptoms are there but less intense. The only one thatís still there and very annoying is the dizziness.

I know dizziness can be a MS symptom but itís near constant. Very discouraging.

Seymour
18-07-19, 18:39
I had a severe bout of anxiety the last two days for non-health reasons and my symptoms skyrocketed. Now I’m twitchy all over. It’s crazy how anxiety doesn’t help health symptoms.

pulisa
18-07-19, 19:33
It was good of you to try to help Jonny despite all your own issues and yes,anxiety can play havoc with bodily symptoms.

MyNameIsTerry
19-07-19, 01:49
It's exactly what happens, Seymour. You can understand why when you think it's all about the neurotransmitters interacting with the systems in our body. It's a reaction, like the immune system, just a less helpful one for us!

The same with OCD, underlying anxiety increases and all those behaviours and intrusive thoughts get much more intense. Calm your body down and the opposite happens.

This is why it's not all about CBT and therapy.

Seymour
20-07-19, 15:05
Thanks Terry for still replying to my thread patiently after all this time. :)

Symptoms are definitely less intense but what worries me a lot is my right arm. It feels tight like it’s always contracted and I get twitches frequently. Scared it’s something serious... I wonder what could be persistently causing this.

My whole body just feels weaker. I tremble easily. But compared with a few weeks ago it’s better. Maybe it’s the MS remitting for now? :s

Seymour
22-07-19, 17:45
Let’s be real after 7 weeks if it was MS would I likely have developed an evident symptom like vision troubles, clinical weakness or pins and needles in a whole limb or a drop foot?

Fishmanpa
22-07-19, 17:50
Let’s be real after 7 weeks if it was MS would I likely have developed an evident symptom like vision troubles, clinical weakness or pins and needles in a whole limb or a drop foot?

Remove the question mark and make that a statement as oppose to a reassurance seeking question.

Positive thoughts

MyNameIsTerry
23-07-19, 03:45
Thanks Terry for still replying to my thread patiently after all this time. :)

Symptoms are definitely less intense but what worries me a lot is my right arm. It feels tight like it’s always contracted and I get twitches frequently. Scared it’s something serious... I wonder what could be persistently causing this.

My whole body just feels weaker. I tremble easily. But compared with a few weeks ago it’s better. Maybe it’s the MS remitting for now? :s

Mental health issues can have a massive impact on lots of systems of the body. I know with mine I've had periods of so much weakness, trembling muscles that felt weak and easily taxed by things that previously were not anything for me.

MS remitting for now? Or anxiety reducing and you have some respite and less symptoms?

Seymour
23-07-19, 20:49
Hi Terry. I don’t know what to think anymore frankly!

One problem I have that can’t be anxiety is a slight dizziness that’s almost always there. It’s worse standing up and walking. It’s like I’m ever so slightly unbalanced but not to the point of falling down or walking funny. Almost feels like when you’re walking around after a night of insomnia.

Did that ever happen to you?

Alde
23-07-19, 22:23
Hi Terry. I don’t know what to think anymore frankly!

One problem I have that can’t be anxiety is a slight dizziness that’s almost always there. It’s worse standing up and walking. It’s like I’m ever so slightly unbalanced but not to the point of falling down or walking funny. Almost feels like when you’re walking around after a night of insomnia.

Did that ever happen to you?

Can be due to anxiety and judging by your posting itís extremely likely that what youíre feeling is due to anxiety.

Itís always there because youíre always tense - even if you think youíre not. I know because I have exactly the same feelings.

As Iím getting less anxious and more relaxed the feelings are going. Not gone by any means but I know they are a lot less than when I was frantically looking for reasons for it.

I also know this probably wonít be much help to you at the moment as no reassurance could help me for long when I was at my worst. However, as you start to accept your anxiety and get better you will start thinking the same way.

I havenít been right for 8-9 months now but I can slowly feel myself being less tense and as this happens the symptoms are lessening. Donít expect it to go away quickly but you will get there.

MyNameIsTerry
24-07-19, 05:11
Hi Terry. I donít know what to think anymore frankly! One problem I have that canít be anxiety is a slight dizziness thatís almost always there. Itís worse standing up and walking. Itís like Iím ever so slightly unbalanced but not to the point of falling down or walking funny. Almost feels like when youíre walking around after a night of insomnia.Did that ever happen to you?I've had lots of dizziness. It was worse when my anxiety was at a worse stage. If I was more likely to experience brain fog or headaches then dizziness would be a possible more common symptom for me. If you have seen threads by another member, Aquilegia, he's had it daily for years and knows it's anxiety. Like said above it can even be due to things like muscular tension.

Seymour
24-07-19, 18:08
Thanks guys much appreciated. I’m on a waiting list for an MRI so hopefully that will rule out MS.

Speaking of muscle spasms, my right arm always feels tense and twitches often and I even have twitches below my lower lip and sometimes in my cheek. Can it be anxiety too or most likely a neuro disease?

MyNameIsTerry
25-07-19, 03:51
Think about another condition, perhaps a cold, and ask yourself whether you would jump to conclusions about shifting symptoms whilst still have a cold? For instance, one day you are sneezing, another your nose is streaming, another you have a headache, etc. You may have them all together but they often come in stages across the timeline of the condition.

Isn't that the same as anxiety in that we have an enourmous list of symptoms and we can experience any of them during that timeline?

With the cold if you do something to make it worse then the symptoms worsen. The same with anxiety.

The difference is that HAers will jump well beyond it all and look towards worst case scenarios because the subconscious thinks it's trying to protect you. It isn't saying you have xyz but it is saying "what if". It is just blurting out stuff and it's up to the conscious mind to decide what matters and what doesn't.