Spondylitis Association of America Forums General Discussion General Message Board for Ankylosing Spondylitis and Related Diseases MS and neurological symptoms

I’ve read that MS can be hard to diagnose because sometimes scans are clear but what are the odds really....

I still feel like I’ll pass out and I go into derealization and dizziness to the point where I feel like my vision is going to go.

I’ve had two full blood workups, an ECG and brain MRI, all clear. I can’t believe it’s only anxiety. I was convinced it was MS for more than two months. Now I’m left feeling completely clueless.

Do you guys think I could have some internal bleeding somewhere that could cause the sensation?

That's good news, Seymour. Try to view it as such.

Have you seen an ENT about this and/or tried taking antihistamines to see if it helps your dizziness?

No I haven’t yet.

My rheumatologist is sending me to a neurologist because I had many questions and she wants to reassure me.

I read that sometimes there are no lesions even if you have the disease and I’m clinging to that. I guess it would be very rare...

My rheumy has ruled out MS but from what I’ve read a MRI isn’t enough to rule it out 100%...

She says dizziness isn’t even a frequent MS symptom compared to a lot of other things.

I don’t know why I’m obsessed with MS.

Honestly if you guys had a clear brain MRI would you feel satisfied or would you pursue further testing like lumbar puncture?

I mean I did have neuro-like symptoms so having a hard time letting go of this MS thing.

Ah, Seymour, glad to hear it came out ok. I haven't been on for a while, but yes I was one of the extreme few who actually get MS symptoms (full on with brain lesions) after taking Humira. It is extremely rare. In my case, the symptoms weren't mild - they came on hard and fast. Full on shaking and quivering in my jaw, hands, weird tingling sensations in my head and loss of control in my legs which led to falling several times. It was extremely noticeable. I told my rheumy about it several times online and when I was finally able to see her she had me quit the Humira immediately because the trembling in my head/jaw was so noticeable. MRI's showed multiple lesions. Good news was, within 6 months of stopping Humira I was fine, no more symptoms and haven't had any since (it's been years now). The lesions will never go away. They monitored me for a few years just to make sure no new lesions came up. I would say, if you have no lesions, more than likely it is something else at this point. I wish I could still take the Humira because it was working! Now I can't take any of them...so I took Orencia, which didn't last long - now Stellara. It's been working for a while combined with Sulindac and Plaquenil.

I went through a "do I have MS" scare many years ago, when I was in the early stages of being diagnosed and treated for what is now most likely psoriatic arthritis or AS... so I understand why you are freaking out. I am also an anxiety-prone person in general, so that didn't help. I remember back during that time I had a lot of symptoms that I was attributing to possible MS. My rheumatologist did send me to an MS center and I had a lumbar puncture and some EMG testing. I don't think I had an MRI. All of the testing was negative, and all these years later (been on on Enbrel since 2000), still no MS.

If you can have some further testing, it might be worth it to put your mind at ease. Its very hard to just sit back and relax when you are worried about something like this. Hopefully your symptoms are just a sign of something else going on in your body and your mind has just become highly fixated on them due to anxiety. That would be the best case scenario. My rheumatologist took my concerns seriously and I'm glad he did, rather than just try to minimize it. It wasn't fun doing those tests, but it gave me some facts to hang on to, which calmed the anxiety.

Best wishes to you!

If you can get extra tests go for it. Right now I am waiting for an MRI, and with our free Canadian healthcare, that won't be until March 2020.