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MS and neurological symptoms #283241
06/13/19 12:08 AM
06/13/19 12:08 AM
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seymour Offline OP
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Hi everybody,

Ok so I’ve been on Enbrel for almost 7 years now. Never had a single side effect.

8 days 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.

So I looked up the symptoms on Google and yeah... big mistake. Found a lot of stuff about MS. Freaked out completely. 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 days ago. So I had 5 days of panick 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 yesterday cause I’m stil mildly dizzy and I have strange sensations all over like someone flicking water on me.

The GP did a neurological exam, reflexes, eye movements, walking on tip toes, all that jazz. She said everything was normal and that there is nothing indicative of MS so she didn’t want to order an MRI. She says my symptoms don’t sound like MS cause they are 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.

She ordered complete blood tests to check for vitamin deficiencies, diabetes or thyroid problems. I broke down crying cause I feel like I have MS and no one will take me seriously. I still have dizziness, heavy legs and weird sensations but the GP attributes this to extreme anxiety, tiredness and somatization. She gave me lorazepam and sent me away.

Does anybody have MS or MS-like syndrome that they got from anti-TNF? Can it happen after that many years of no side effects and do my symptoms sound like MS at all? I’m going crazy. I’ve read about a girl online who felt the same « Water flicking » feeling and had MS. But some other guy had the same thing with just B12 deficiency....

Re: MS and neurological symptoms [Re: seymour] #283242
06/13/19 01:59 PM
06/13/19 01:59 PM
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Winston Online
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I see a neurologist regularly (twice a year) due to some ulnar neuropathy in my right arm and a Vitamin B12 deficiency. I also take Enbrel. When my arm symptoms initially started (numbness and weakness, no tingling), my rheumatologist sent me to a neurologist to rule out an Enbrel-induced demyelinating disease such as MS. The neurologist did a brain scan as a precaution (it was normal) but told me that my symptoms -- present in just one arm -- were not how such diseases initially present. She said that when they see a biologic-induced demyelinating syndrome it is typically bilateral and begins in the feet and lower legs. Hope that helps.

Have you gotten your B12 results because a B12 deficiency can cause all sorts of weird neurological symptoms?

Re: MS and neurological symptoms [Re: seymour] #283243
06/13/19 04:03 PM
06/13/19 04:03 PM
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dan321 Offline
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Sorry to hear you're going through this, that must be very scary, especially just not knowing what it is and thinking the worst. I have been reading AS forums off and on since 2012 and in all that time only saw 1 person mention that they believed they got MS from using a biologic. So I imagine it is quite rare in practice, although I must say hearing about that incident is one of the reasons I've not ventured into biologic territory. Good luck and hope others are able to provide you more insight.

By the way this forum is good but not terribly active as others have noted. In parallel you might consider posting on the Facebook forum if not done already. I find you get replies within minutes there, although the quality of replies varies.

Re: MS and neurological symptoms [Re: Winston] #283244
06/13/19 06:11 PM
06/13/19 06:11 PM
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seymour Offline OP
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Originally Posted by Winston
I see a neurologist regularly (twice a year) due to some ulnar neuropathy in my right arm and a Vitamin B12 deficiency. I also take Enbrel. When my arm symptoms initially started (numbness and weakness, no tingling), my rheumatologist sent me to a neurologist to rule out an Enbrel-induced demyelinating disease such as MS. The neurologist did a brain scan as a precaution (it was normal) but told me that my symptoms -- present in just one arm -- were not how such diseases initially present. She said that when they see a biologic-induced demyelinating syndrome it is typically bilateral and begins in the feet and lower legs. Hope that helps.

Have you gotten your B12 results because a B12 deficiency can cause all sorts of weird neurological symptoms?


The GP was kinda useless like a lot of GP's are... She ordered a complete blood count (CBC) and told me we'll only do the B12 test if there's something wrong in the CBC... Told me the ususal symptom of B12 deficiency are more along the line of numbness like when you go to the dentist. She won't even send me for an MRI since I passed the neurological exam but it was kind of half-assed... She did ask for thyroid, diabetes, liver function, etc. so we'll see what the blood results tell me. As far as feeling mini-tingles here and there she says it's not how MS presents. Says the tingles 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.

Today my dizziness is better, about 70% gone but my right arm feels weak. It's not numb per se because it hurts when I pinch it but it "feels" numb if that makes sense? No tingles I just feel like it's weaker, like it hangs more than my left arm. I feel like it trembles easier than the other arm if I keep it raised.

I know it's not REALLY weak though because I can do push-ups and I can even stand on one arm in push-up position which I guess I couldn't do if it was weak or numb from a neuro problem. It's kind of driving me crazy. I can still type super fast like I'm used to but I feel clumsier when I pick up objects even though I don't drop them or anything. It's like a feeling inside that I feel like I could drop stuff but I don't. I think it's getting to the point where I'm just super conscious of every movement instead of doing them naturally if that makes sense.

My problem is that it's all based on "feeling". There's no objective loss of strength or function (yet?) that they can pinpoint with a physical exam. GP flat out told me she won't send me for an MRI cause it might pick up something unrelated and benign that they'd have to investigate and it would cause more useless anxiety. She's convinced I suffer from depression, anxiety and exhaustion, that thinking about symptoms all the time makes them appear in a somatic fashion.

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.

Re: MS and neurological symptoms [Re: seymour] #283245
06/13/19 07:21 PM
06/13/19 07:21 PM
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Winston Online
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When I started having symptoms, I also went first to my GP. She did a neuro exam and concluded that there was something terribly wrong with my reflexes, particularly the reflexes in my legs. It scared me to death. When I saw the neurologist, she repeated the test and concluded my reflexes were completely normal. So, while I generally like my GP a lot, I'll never ask her for a neuro test again.

I don't understand the refusal to order a B12 test, which is a relatively cheap blood test. The CBC will show anemia, which can be caused by low B12 (pernicious anemia), but you can have symptomatic B12 deficiency without anemia. You might be interested in reading this book on the topic: https://www.amazon.com/dp/188499569...4FSXI&psc=1&ref_=lv_ov_lig_dp_it

Re: MS and neurological symptoms [Re: seymour] #283246
06/13/19 07:45 PM
06/13/19 07:45 PM
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seymour Offline OP
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Do my symptoms even sound like MS?

Thanks for reading and replying by the way.

Re: MS and neurological symptoms [Re: seymour] #283247
06/13/19 08:11 PM
06/13/19 08:11 PM
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Winston Online
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The symptoms you are reporting here are not specific to MS. In other words, they could be symptoms of many things, including B12 deficiency, or of nothing at all. Personally, when I develop some weird new symptom or cluster of symptoms, I always wait a couple of weeks before calling the doctor. The symptoms usually just go away on their own.

Note that when I began experiencing those symptoms in my arm -- the numbness and weakness -- I also started waking up in the morning with headaches and vertigo. That was definitely caused by the low B12. They went away as soon as I started getting B12 shots.

Re: MS and neurological symptoms [Re: seymour] #283248
06/13/19 08:21 PM
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seymour Offline OP
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I have dizziness/vertigo too. It gets better sometimes but it's pretty much always there to some degree.

Re: MS and neurological symptoms [Re: seymour] #283253
06/14/19 04:08 PM
06/14/19 04:08 PM
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seymour Offline OP
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Winston,

When you say weakness and numbness, does that mean you couldn’t feel your arm? Could you explain how weak you felt?

Re: MS and neurological symptoms [Re: seymour] #283254
06/14/19 07:26 PM
06/14/19 07:26 PM
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Winston Online
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I couldn't feel two of the fingers on my right hand (the pinky and ring finger) and my grip became unreliable. I also had an intention tremor. My hand would visibly shake when I, for example, picked up a coffee cup or a fork.

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