i posted here several months back pretty convinced that i had MS, but my neuro wasn't supporting the theory since i had had two clean brain and two clean spine MRIs and a normal VEP. i have since been diagnosed with optic nerve vasculopathy after seeing my neuro-ophtho due to severe eye pain and spontaneous pupil dilation and have been seeing a rheumatologist who feels i am suffering from an autoimmune disease process that is manifesting neurologically. she put me on plaquenil and i am scheduled to participate in a sjogren's disease study at our local university medical center to rule that out.
to further confound things, i had another follow-up MRI this past week and my neuro called me last night to tell me it showed "inflammation" or a lesion on my cervical spine. he said it was transverse myelitis and although could be a one-time occurrence, it was probably due to MS. in less than 24 hours, i found myself in the outpatient infusion lab receiving IV steroids, i am scheduled for a 3T brain MRI and a lumbar puncture. my head is spinning.
i know that optic neuritis can be related to MS, but has anyone here experienced optic vascular inflammation in conjunction with their illness? or am i dealing with two discrete illnesses here? i know it is possible to have more than one autoimmune disease, but for them to present simultaneously seems a bit crazy. but then again, i guess anything's possible.
thank you in advance for reading my post. i welcome any and all feedback from folks in the know.
Binx, for many of us, one of the first signs of MS was optic neuritis. With me, I had had eye problems off and on for months, when another symtom took me to the ER, had me having MRIs and within the week, a lumbar puncture- showing a conclusive MS diagnosis.
I wish my opthamologist had diagnosed optical neuritis correctly and had referred me to a Neurologist, instead he diagnosed "inflamed optic nerve" which IS OPTICAL NEURITIS, but I didnt know enough to know this at the time....and he treated it- only for it to return several times.
once a Neurologist was brought into the picture, the whole thing started making sense! Also, my Neuro referred me to a Neuro-Opthamologist, who performed even further testing including an orbitol MRI and VEP. Conclusively my inflammed optic nerve was treated properly (with IV Steroids) and didnt return again- and my MS life began! I went on disease modifying drugs (first copaxone, then Rebif) and got my life together.
Scary as the LP is....it was over in ten minutes, and didnt hurt at all. The anxiety of worrying about it almost sent me over the edge though. Youll get thru it, just listen to your doctor and do what he says! And, drink a ton of caffeine and stay flat on your back afterwards for 8 hours minimum. The headahce will they talk about, only happens, if you get up too soon or do too much.
Sounds like you finally have a plan to figure this out and that you are well on your way to getting answers. Youll be alright. Trust your doctor and keep us posted.
thanks, nikki, for your encouragement--i am eternally grateful. i had communicated with you before about all this and you were equally helpful and kind then.
i have seen two neuro-ophthalmologists and they haven't seen optic neuritis, and both said my optic nerves look perfect. what the second, much more senior doc said he observed was vascular inflammation in my arteries which he labeled vasculitis. he said this would explain the unusual pupil dilation i experienced since the arteries feeding my optic nerves were much smaller than he would expect for someone my age. he explained that this is commonly seen in patients with lupus or other inflammatory autoimmune diseases and referred me to the rheumatologist out of concern that it was central nervous system vasculitis. i asked about the possibility that MS would cause the inflammation and he said no. i did have another normal brain MRI and an LP to help rule that out, and i am kicking myself for not having my neurologist run the MS panel on the CSF while he was in there, but he didn't feel it was necessary. so, i will go through the LP again. bleah.
at any rate, this is the source of my confusion. does MS cause small vessel inflammation or am i dealing with both a rheumatological disorder along with possible MS at this point?
thanks again for your input. i sure appreciate it as i lay here unable to sleep because of the solumedrol. my sleeping pill only lasted for 5 hours.
Oh Binx. I feel for you. Such allot to contemplate! And Steroids on top of it all. Id say you are handling yourself pretty well!
To answer your questions: No. To the very best of my knowledge, small vessel dialation is NOT connected to MS; however I do not know all- and its possible that in some strange way, inflammation from CSF is affecting those vessels. I do remember talking to you about ON in the past. And, its good that its not ON, although it might make your dx alittle easier... ON is a horrible thing to have happen, so we dont want you to have it! This other thing you are experiencing, Im going to read up on it and talk to someone in the know- Im curious to hear another opinion on if there could be a connection. Ill be seeing my Neuro and someone else who actually specializes in Lupus on Monday- Ill let you know if I hear anything which might help you.
Meanwhile, Im going to give you something to mull over....the LP. NO LP is conclusive. The reason they are used is to rule out infections, certain diseases.....PML, Meningitis and a few other infections can be determined by having a LP....however when it comes to MS, they only thing they look for is OBands, which point towards autoimmune disease. They arent conclusive, and if you arent absolutely convinced that youll get some kind of answer out of doing this again- really stop and ask your doctor what he is trying to accomplish by repeating it- then dont do it.
The truth is most of us do not have positive LP results. Ive never had a positive LP...and Ive had 3 of them. But I most certainly do have MS. So question that before you jump into it.....not that the test is really that big a deal (as you already know) but why put yourself thru it unless someone gives you a seriously concrete answer as to what they hope to find...
Unfortunately, so many things present like MS - even Rheumy diseases- you might be in for a long haul with testing...until something concretely shows up, they arent going to dx you...which is good. You certainly dont want a WRONG dx.
im thinking of you...please keep us posted. And, try to sleep. I know how hard it is. They are expecting 12 inches of snow this weekend where I live- and Im thinking getting snowed in would be fun, if I didnt have a house to clean from top to botom! Wanna come clean my house?I know when Im on IVSM, my house is never cleaner!! Try to relax...and let us know what you find out. Ill keep you posted to, if I hear anything.
i appreciate your very thoughtful reply, and for sharing your wisdom about the whole LP process. i will keep that all in perspective when i go back in for my second LP next week. i am really learning that for so many folks dealing with MS and other autoimmune syndromes, diagnoses are never timely or clear-cut. the lines between MS and some other rheumatological disorder are particularly blurry in my case which is so frustrating!!
i just got the copy of my c-spine MRI report and i was wondering if you or anyone else here might be able to shed some light on this part of the findings:
"There is a hyperintense signal within the anterior third of the substance of the spinal cord from the level of the c3-c7. This is confirmed on axial imaging and may represent possible sequelae from possible myelitis. Follow up imaging with gadolinium is recommended to further assess this finding."
thank you again for taking the time to help me and others in my position cope with all of this.
and, yes, i am sure i would be like the white tornado at your house right now after my 2nd IVSM!!
Binx, unfortunately it means there is inflamation on your spinal cord in your upper Cervical Spine, but that they should have used contrast! Its not conclusive for anything...
Can I ask what age group you are in? ITs not unusual in your 30s to start seeing this- it can be caused by nothing more then normal aging process. The older we get, the more changes in our spine are noted...
If you had had contrast it MIGHT have picked up any lesions which might be causing this. Im 43, and I have bulging discs in C3-C5. I have neck and shoulder pain all the time. I also have MS; however I have absolutely NO LESIONS in my spine that have shown up to date....all mine (over 50 of them) are in my brain. Ive been getting trigger point injections (cortisone in my muscle) of my shoulder blade- trying to allieviate the pain...
My MRI reads much the same as yours...
Woke up to 10 inches of snow and its still coming down! NOt supposed to end until 7 pm...and the funny part is 45 miles away, it missed them completely! Guess my house will get clean this weekend afterall...
I dont think you are going to have any conclusive results from your test ...so yeah, think hard about the LP and ask all the right questions. I feel for you. the not knowing, IS THE HARDEST PART. hang tight. and be brave!
i'm in your age group--i'm 42. i also have cervical disc problems--a herniation at c5-6 and other bulges above and below. my neuro thought that was the cause of my problems a year ago, and had ordered the c-spine MRI just to check to see if there had been any changes in my spondylosis. we didn't expect to find anything else.
hopefully with follow up 3T MRIs on my brain and c-spine with contrast we'll get a better idea about what's going on. in the mean time, i go for my 3rd and final IVSM this afternoon. i am not looking forward to the next few days when i come down off the roids, but i am grateful DH will be home to help me out.
enjoy your snow and stay cozy. we're just getting lots of rain here in nor cal, which we desperately need, but it isn't nearly as picturesque.
again, your feedback has been of immeasurable value to me. thank you so very much, nikki.
Youre welcome Binx. Didnt realize you were in N Cal. Ive got family in Sacramento, too! Love it there!
yes, I do think further MRI with contrast might give you some answers- one way or another. Ruling things out is a answer too. Sounds like we have similar back issues as well....Hurts- doesnt it??!! Ive done PT, accupuncture and even hypnosis trying to get rid of the pain....now, I just ride it out. It comes and goes...when its really bad, the trigger point injections keep it manageable. No time to be "down" with any kind of pain in my life.
So far, ive cleaned the downstairs and done some laundry...managed to work out for 1/2 hour and clean out the cat box...guess Im on a roll! I was about to start on my office, when I got side tracked