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Multiple Sclerosis Message Board

Multiple Sclerosis Board Index

Hello everyone,
I've just joined and have lots of questions ,so please bear with me.

I have MS and Lupus on my list of differential diagnosis........but so far no diagnosis.

I'm 45 and had surgery nearly 4 years ago which seemed to really stir things up, although I can trace some problems in 30's and even some as far back as teens.
So far my bloods for Lupus are negative, despite some alarming symptoms, which do differ in severity. Like a lot of you I'm sure, I've had endless investigations and am interested in some feedback from those that have travelled this path.

I am currently seeing a new Neuro (last one was pretty slack), and also an Immunologist whom I saw from the beginning.
I have a low C4 level, which is getting lower, a lowish C3 level and low total complements. They weren't always this way, so it's not a familial thing, they are declining. I've had 2 MRI's in the last couple of years, first showed 'several' (Neuro saw 2/3) white lesions of T2 hyperintensity, but no gadalinium used, reported as being in parietal lobe, ..........Subsequent MRI last summer after exacerbation revealed 5/6 of these lesions in frontal lobe........this time I went back and they did the dye and they did not show enhancement with gadalinium. I also had a lumbar puncture, but they did not do bloods on same day grrr, slip up at was a week later they had bloods to compare findings. Findings, normal, no oiligoclonal bands. Would the results differ from week to week, my symptoms come and go, vary in intensity, but some are always there. I was having focal seizures at the time and I have been diagnosed with a dystonic tremor and also an intention tremor. New neuro wants to do Botox for dytonic tremor I'm holding off on that!! He is slowly getting more of my story and..........slowly being the operative word here LOL!

Like many of you (I'm sure) it's been a long, winding road and finding decent docs is not easy, there seems to be so much conflict of opinion about all this stuff. Around 18 months ago I had severe spinal pain after coming off a short course of cortisone, and I now have prolapses to add to my woes. I've been diagnosed with a neurogenic bladder even before that though.

I'm on Ditropan for my bladder spasms, I'm on anti-inflamms which seem to help some of my pain and I've been tried on various anti-depressants at low doses which I feel were mainly to shut me up LOL- they did nothing for my pain or my other symptoms, I've weaned off them. They made me dopey and unable to seek the medical care I need.

The sun and heat are big exacerbators for me, I am a very allergic individual (and that makes it hard to work out if my rashes are from allergies, drug reactions or part of my disease) , but I really thought that if this was Lupus or even anti-phospholipid syndrome that something else besides the low complements would be showing in blood.

I guess what I'm asking is your experiences with MRI results..........they were closing the book on MS, but now they seem to be leaning a little more towards it. I was examined earlier this year and flunked the Neuro test........a few days later I had a virus, so maybe that stirred things up for me, at least they got to see some of this!

Thanks so much for reading this long spiel........I need your feedback. I've had to give up work several years ago, am not looking forward to our summer and just generally need to find out what's going on so I can get correct treatment.


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