I thought some of you with neurological presentations of Lupus might find this article informative.
It's fairly indepth but I found the info on MRI and EEG investigations and the diagnostic dilemna between MS and Lupus interesting. There are several here who are still in limbo with their neuro problems so I hope it helps.
Lilly,
That is a very informative article. Pretty technical. I wish I could give it to my doctor.
I don't understand even a 1/3 of it. That is why I would like him to translate thanks for thinking of us,
I went through years of the MS vs Lupus thing myself and in the end it's Lupus for me.
So far I have official dx's of encephalopathy, mononeuritis multiplex, cranial neuropathy, and vasculitis. I also have questionable dx's, i.e. depending on which Neuro you talk to , of a small stroke and optic neuritis.
The neurological involvement in Lupus can be extensive.
:wave: Thank you Lily.The doctor who recognised my symptoms all those years ago was spot on. He told me at the time that although a differential diagnosis was considered, the evidence with the bloods was conclusive.So, Lupus it was.I had a very close school friend who died with complications of M.S. at a very young age, so I condidered myself fortunate to have something else instead. My neurologist works hand in hand with my rheumatologist to keep me ticking over. I realise that not everyone is so lucky with their doctors, but I remind myself that it has taken many years to get to this stage.So, to those who dont have this back up, keep seaching and educate yourself and the public about your symptoms. Recently I wrote to my member of Parliament requesting more research in the U.K. and she passed it on to the health secretary.One small voice perhap.......but who knows. :nurse:
Kathleen.
I'm so glad I have a good team of docs now. The Neuro I got to after a dud neuro hasn't even blinked and eye about my wide and varying array of neuro problems. The first neuro wanted to rule out MS and anything after that was 'too complicated' and messy to deal with! She did not document half of what I told her or I presented with during that first consultation which led to an uneccessary delay in diagnosis for me. It's extensive and baffling to those Neuro's who are 'uninititated' as far as the complexity of Lupus goes.
So once again it pays to educate ourselves to make sure we are getting the care we deserve. If one neuro is baffled or seems unconcerned about 'unremarkable or unclear' diagnostic tests then please try and find one who will look at the big picture.
:nurse: Great article...took me a while to translate it for myself, but worth the effort. Thanks for sharing. I just made a document and filed it. Brenda
Thank you Lily for the information. I've printed it out to hopefully get one of the doctors I've been seeing the past month to help me get dx.
Anisah, I have had a stroke also. It happend after falling several different times and braking my left leg. Since then I have fallen more and almost broke my right leg. I notice I fall more when I get tired, stressed out, or both.
I am so glad to have found ya'll and this website. For years now I've been thinking I was going crazy (or was already crazy) with no one to understand. :wacko:
Thanks Lily. I'm half way done with it, am printing it, and will finish it while I take a bath! I love emedicine for info. It almost seems like every neurological symptom could be seen in either disorder. I found the brief discussion of MRI patterns interesting. Susan
I just finished reading the article link. Very informative. I have saved it I plan on highlighting some focal points of the article and bring it to my new rhummy apointment.
Thanks, for the interest between MS/Lupus. My good friend has MS and had to go to Ireland to finally get a diagnoses and disability. I wonder if depression is another side effect of Lupus?? Do you Know? Thanks Angel F.
Fantastic Document. I am also going to copy it to Word and print it up for my doctor. I saw myself in so many things there. It really validates a lot for those of us suffering from any one of those neurological problems. Which worries me as well, because there are so many devastating things that happen, and lordy, I've had some terrible CNS involvement... I pray that I don't get any more.. I really do.
:wave: Hi Everyone,
I read the article and couldn't understand it and then couldn't get it to print. My daughter printed it for me and mailed it to me and now I'm studying it.
The neurologist's nurse called me to supposedly tell me what the white spots in the brain were and said"you have a high ANA"...DUH!....I'm currently either thinking of going to another neurologist, trying to get an appointment with the current one (he evidently doesn't talk on the phone to patients), or forget it. My daughter lives in Wichita Falls and the doctor is in Tyler. She called and they asked if she wanted an appointment to discuss my case with them...She is 5 hours away.
If I do go back to this one, I will take the article.
Disgusted and confused...
JulieCB
The artical looks great but I can't understand it. Has anybody translated into layman's term? I am new at this and just starting to get some definitions down.
I see nero on monday. Then in a couple of weeks.
Even if you were diagnosed with MS, fatality rate with MS
is rare. I have MS.
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