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brain lesions and Ankylosing Spondylitis

For 3 yrs. I was treated for MS.  No medications worked except Solumedrol and now that doesn't work.  I also have Ankylosing Spondylitis and need TNF meds for it (pain has gotten bad).  My neurologist doesn't think the brain lesions are from MS but doesn't know what.  They are multiple small foci in the subcortical white matter of both hemispheres in a symmetric distribution.  My symptoms are balance difficulties, vision-Optic Neuritis, and leg weakness.  I also have arthritis of the spine and ulcerative colitis.  I have been told by one rheumatologist that I cannot have TNF drugs because of the brain lesions.  The other rheumatologist I saw had consulted with my neurologist and she is willing to give me TNF drug.  I am concerned and confused on what to do.
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Avatar universal
I have had ankylosing spondylitis for 20 years now and am aged 40. I started getting numbness in my left hand about 5 months ago and then the right side of my face about 2 months ago. I have also lost power in both shoulders progressively. I saw a neurologist and had an MRI scan 2 weeks ago. My results came back last Thursday night. Showing multiple white areas of demyelination in cervical spine and brain. The neurologist suspected MS and has given me dexamethasone for 18 days in a pyramidical dosage from 8mg reducing by 2mg every 3 days.
I have to go back to see him in the new year. I have been doing research to see if it could be anything else as I would like to be able to at least rule out the possibility of MS but have not found anything. Not sure if you have had any more news since your post? Will keep you informed re my condition.
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Avatar universal
My husband has been diagnosed with ankylosing spondylitis and neurofibromatosis (nf2 is all I can locate but the doctor calls it nf4). He has a second acoustic neroma (he's deaf in one ear), another tumor behind his eye, and tumors along his spine. The one along his spine has affected his liver, and he also has advanced non-alcoholic cirrosis. His heart isn't so great, suffered from a mild stroke earlier this year and previously has had 2 mild heart attacks. He suffers from too many other things to mention as a result of these two genetic diseases. I'm looking for more information on treatment, quality of life, and prognosis of those with all of these diseases. Anyone? BTW: he's 43.
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Avatar universal
dittledittle regarding your post about
brain lesions and Ankylosing Spondylitis -  I was so surprised to read that someone has similar issues as me. I too have AS, had colitis, but under went a total colectomy and have a jpouch now. I also have brain lesions that can't be explained, no neurological symptoms until i was put on MS drugs, now i have no feeling in my left hand. Trying to figure out if i even have MS or in brain lesions are a result of my AS and colitis. Just wondering how you are doing and if there are any updates you would like to share. I am in the process of getting a second opinion on my MS diagnosis. I know it has been a while since your last post, but hoping I am able to reach you, I think we can be of some help to each other. Thanks and all the best
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Avatar universal
I have probably had anklosing spondylitis, undiagnosed, since my late teenage years.  It was finally diagnosed a couple of years ago - and only after the symptoms got really bad and my husband and I spent a lot of time trying to figure out what could be wrong with me.  One rheumatologist decided that he didn't know what was wrong with me because I didn't test postively on any of his tests.  He then wrote a report diagnosing me with Fibromyalgia after failing to do any tests for this.  In other words, he assumed that the disorder with psychological and the FM was simply a Diagnosis of Frustration, rather than one of Exclusion.

I had an MS scare last year which resulted in me being taken off my biolgics for 6 months, whereupon everything got MUCH worse.  My neurologist would not take my primary care physician's suspicion's seriously.  I finally persuaded him to give me a repeat MRI.  This time I got a copy of the images.  There were upwards of 40 white matter lesions in my brain.  It was not a clear cut case of MS, so I persuaded my neurologist to consult with another neurologist with expertise in MS as well as a radiologist with relevant expertise.  They decided that I did not have MS,   that the inflammatory condition had caused it but that it would be wise to change my biologic for another type that was cited as possibly causing MS to develop.  

I suspect now, that the noted interaction with my previous biologic and MS was a misunderstanding caused by the failure of the medical profession to realize that generalized autoimmune inflammatory conditions may also cause inflammation in the brain.  A few years ago I develop a weird form of "migraine" that rarely produces a headache, but affects my balance and my expressive language during an attack and is followed by a post-drome of extreme sleepiness.  I can sleep for up to three days with only minimal breaks for toileting and whatever food and fluids I can find the energy and alertness to find and prepare.  I also get sporadic written and spoken language problems, usually word finding difficulties (in all my languages) and the commission of numerous grammatical errors - wrong tense, wrong spelling, a rhyming word, etc.  

I don't have the standard gene that is known to cause AS, given the appropriate triggers.  It can be assumed (after consulting Brown, an Australian expert in the genetic basis for AS) that I have at least one, and probably some combination, or the other 20 genes that have been identified as causal.   It is possible that you and I, and any others who have extensive white matter lessions AND anklosing spondylitis, share one or more abnormal genes from the known pool.   It is time for some medical researcher in search of  PhD topic to test this hypothesis out.  This might lead to early detection and ways to prevent the brain damage.  I do hope so.
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Avatar universal
Some of my language difficulties can be observed in the post above.  I need to correct a few of them.

I was on the TNF blocker, Humira.  It has been associated with the development of MS, or MS-like symptoms after about 6 months - my time line exactly.  
The conclusion is that anyone with an inflammatory condition like AS, and have diffuse white matter lesions, or symptoms that are consistent with this, should NOT take Humira or any other TNF blocker.  
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