Page 1 of 11 123 ... LastLast
Results 1 to 10 of 104

Thread: Please help - Huge HA and MS scare

  1. #1
    Join Date
    Jun 2019
    Posts
    281

    Please help - Huge HA and MS scare

    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.
    Last edited by Seymour; 24-06-19 at 04:25.

  2. #2
    Join Date
    Aug 2017
    Posts
    1,083

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Seymour View Post
    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 aren’t useless they are just more trained than we are.

    Yes the symptoms are real, but that doesn’t mean they are caused by a physical ailment. You haven’t 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. - I’ve been there, not with MS fears but with other health concerns before I kicked health anxiety’s butt to the curb. My ‘symptoms’ included yours and some!

    Positive vibes,

    Mouse


    Sent from my iPhone using Tapatalk
    __________________
    The woods are lovely, dark and deep,

    But I have promises to keep,

    And miles to go before I sleep. - Robert Frost

  3. #3

    Re: Please help - Huge HA and MS scare

    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.
    Last edited by elitejcx; 24-06-19 at 14:35. Reason: Spelling mistakes

  4. #4
    Join Date
    Jun 2019
    Posts
    281

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Midnight-mouse View Post
    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 can’t explain that look like MS and the fact that it doesn’t get better and that neuro exams can be good in early MS. I haven’t 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 I’m very wary of GPs!

  5. #5
    Join Date
    Aug 2017
    Posts
    1,083

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Seymour View Post
    Well, the fact that I have symptoms they can’t explain that look like MS and the fact that it doesn’t get better and that neuro exams can be good in early MS. I haven’t 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 I’m 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 you’ve 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 you’ve 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
    __________________
    The woods are lovely, dark and deep,

    But I have promises to keep,

    And miles to go before I sleep. - Robert Frost

  6. #6
    Join Date
    Jun 2019
    Posts
    281

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Midnight-mouse View Post
    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 you’ve 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 you’ve 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 I’m pretty sure the symptoms can be progressive?

    I’ve 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 can’t believe there’s nothing physically wrong with me and that I’m 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 can’t read, I can’t work, I can’t socialize. All I do is paying attention to my body and analyzing. I’m so scared of having that on top of the arthritis. My gf is three months pregnant too. I just want to feel normal.

  7. #7
    Join Date
    Jun 2019
    Posts
    281

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Pain View Post
    There's your answer, Seymour - I'd bet money on it if I wasn't so anxious about betting on anything these days
    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 can’t get my head around is anxiety « burning up » only one side of my body and making me dizzy and weak even when I don’t feel anxious. Or maybe I’m just anxious all the time.

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

  8. #8
    Join Date
    Jun 2019
    Posts
    281

    Re: Please help - Huge HA and MS scare

    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.

  9. #9
    Join Date
    May 2018
    Posts
    82

    Re: Please help - Huge HA and MS scare

    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

  10. #10
    Join Date
    May 2018
    Posts
    82

    Re: Please help - Huge HA and MS scare

    Quote Originally Posted by Seymour View Post
    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.
    I have been unable to enjoy life due to HA for many years :( some might even argue it’s worse that the fears we have. Sometimes I think so, others times not it depends how bad it is at the time

Page 1 of 11 123 ... LastLast

Thread Information

Users Browsing this Thread

There are currently 1 users browsing this thread. (0 members and 1 guests)

Similar Threads

  1. Huge strides forwards, and a huge stride backward...
    By lofwyr in forum Health Anxiety
    Replies: 4
    Last Post: 15-08-18, 03:05
  2. Huge pupils huge headache
    By jrcoleman in forum Sertraline / Zoloft / Lustral
    Replies: 0
    Last Post: 22-02-18, 19:02
  3. Huge health scare, collar bone lymph node!
    By Mamafox2 in forum Health Anxiety
    Replies: 8
    Last Post: 26-10-15, 14:00
  4. bubbly tummy after huge scare!
    By busybee09 in forum General Anxiety / Generalised anxiety disorder (GAD)
    Replies: 3
    Last Post: 10-10-12, 20:18
  5. A huge thanks to NMP :D :D :D
    By challangerchris in forum Success Stories
    Replies: 5
    Last Post: 13-09-09, 22:51

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •