Behcet's Syndrome Society
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Well, I don't have MS!

I don't know if you all remember my story. I've had issues that my Drs can't seem to explain, and am going through the ruling out everything else phase.

I had some MRIs done to rule out MS, and luckily, I have no lesions at all. So I doubt it is MS, but I guess that's not a definitive. Neurologst just kind of wrote me off since he doesn't know what is going on with me. I'm going to see if I can get a second opinion since he did discover that I have hyper reflexes and clonus, along with a positive Romberg's sign (I fall over when I stand with my feet together and eyes closed). But, since my MRI is fine of the brain, he says I'm perfectly fine! Spine shows some heriated discs and other random things he didn't bother to tell me about (but I have the report to take to my rheumy).

He also discounted my trigeminal neuralgia (cranial nerve in the face, hurts like heck!), but had no explanation for what he thought it might be.

So that was pretty much a waste of a visit, but I guess I'm glad MS is pretty much ruled out. Although, there is something wrong with my nervous system, so I would like to know what is going on, and if it's neurobehcet's.

I think i was kind of hoping for some type of diagnosis, and thinking, well, gee it can't be behcet's if I have ms! Oh silly me!

Meanwhile I've had all kinds of wonderful ulcers, tummy issues, etc, etc, etc.

I missed my rheumy appt on Monday since I was so horribly sick and had spent sunday in the ER (not my appendix thank goodness). So I have to reschedule and find out what my last round of blood tests show.

I think I'm ready to keep going on this awful train towards diagnosis. I'm getting a bit burnt out (as is my poor hubby) but I think it's important to find out if what is truly going on, right???

3 Replies

Hi there

You seem to be having a rough time of it lately, particularly as the neurology appointments and tests didn't appear to produce much in the way of a diagnosis. I don't think other peole realise just how stressful finding no diagnosis against having possible MS is.

It took at lot of hospitals and appointments and different doctors to get someone to listen and every time I got the "perfectly fine" label or the "nothing to worry about" label my heart sank. So I can understand how you must be feeling inside.

Did the Neurologist say anything about the Behcets?....I find this gets completely left out of the discussion if the Doctor doesn't really know anything about behcets.

It was a shame that you didn't get to see your Rhematologist and I would try and discuss the whole issue with him/her when you see them.

Are you being treated with anything as this can be just as important if not more important than having the diagnosis.

Not sure where you live but if in England, it maybe helpful for you to be referred to the Centre of Excellance or if not get your rheumatologist to contact them for advice....this will save visiting too many other doctors and risking going down the conveyor belt too much more

It certainly seems like you have the symptoms of behcets and if that part is agreed to, then it must be one more step towards diagnosing behcets that has affected the nervous system.

Keep making notes of symptoms etc and photographs, if lesions appear and try not to let the neurology appointment get in the way of you finding out what's wrong with you.

Good Luck

Hope some of this helps



Sorry I meant to say about your hubby as he must also be feeling down and very worried. I know mine does when these things happen and sometimes and feeling helpless in how he can help......I have to say is just being there helps :)


Did your neurologist do a lumbar puncture or nerve conduction studies? My MRI was originally clear and was told the inflammation could be so diffuse it didn't show up. I was given a diagnosis following these other procedures. Peripheral nerve damage can only be shown through nerve conduction studies as I understand it and that could cause the nerve pain in your face I'd have thought as it causes a lot of nerve pain and weakness in my limbs and has intermittently affected my face.

I agree with Andrea though that as important as a diagnosis may seem, the most important thing is getting treatment. I know how you feel spending ages having tests that rule things out but nothing in and how emotionally draining this is, but if you could have treatment to make you feel a little better that would help!

I was told some years ago before my diagnosis that most autoimmune, neuro-inflammatory diseases are treated in a similar way and so you may be able to get some treatement without a difinitive diagnosis.

They still won't rule MS out for me (something to do with Oligoclonol banding in my CSF!?!) so I know how stressful it is when they do the MRIs and you are waiting for a result and you and your husband have my sympathy (and my husband's!)

Good Luck



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