Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
HA1989
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.
Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
Seymour
I just can’t 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. Don’t think anxiety would work that way?
I’m 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 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
Re: Please help - Huge HA and MS scare
Ok so I've just Googled "Enbrel and MS" and sent myself into a panic attack. :(
Re: Please help - Huge HA and MS scare
Google is not your friend.
Re: Please help - Huge HA and MS scare
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.
Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
Seymour
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 don’t have ms but obviously wouldn’t 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 haven’t 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 100’s).
Most of the theories are probs b*llocks btw. Nobody knows for sure what causes it.
And on a lighter note. It’s not a death sentence. I do know people with it and you wouldn’t 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 “TAPEWORM INFECTION FOLLOWED BY GLANDULAR FEVER IS THE CAUSE OF MS”
Cue weeks of trying to remember if I’d had glandular fever as I knew I had the worms (hehe) as a kid and couldn’t be sure I’d had glandular fever so I was obviously doomed. Then a ton of comments on the article like “omg this is what I had and now I have ms!!”.
So all I’m getting at is if everything that there was a link to it was true, we would all have ms.
Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
Seymour
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.
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.
Re: Please help - Huge HA and MS scare
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.
Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
pav1984
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 doesn’t 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
Re: Please help - Huge HA and MS scare
Quote:
Originally Posted by
pav1984
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. It’s incredibly nice of you.
I would say the tingles seem to happen more when I’m lying down not doing much and when I am walking outside. Seems worse if I’m hot. It feels like watery tingles, not pins and needles. I don’t remember having done anything I love since starting this MS scare so I couldn’t really tell you.
Based on your experience, you don’t 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 isn’t a death sentence but it would mean that I couldn’t take my arthritis injections anymore and that my arthritis would be let loose. Not a good prospect. I’d be less afraid if it wasn’t for that.
Thanks to you and the very kind people here. You truly do make a difference.