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Hi everyone!  This is only the second time I've been on here since my MS diagnosis in April.  You were all so helpful then, thought I'd give it another shot.  I was diagnosed rather quickly (total of 3 months after testing began) and have struggled accepted it since then.  My initial complaint was with my vision; for about the past 3 years I was experiencing episodes of double/blurred vision in one eye only.  I then started having "odd" sensations in my hand, pins and needles and what I refer to as a "fizzy like soda pop bubbles" feeling!  That progressed to me waking almosr nightly for a period of time with my arms feeling like they were asleep.  I have also experienced veritgo, off balance feeling, lack of concentaration, and other minor symptoms.  I have been on Avonex for almost 3 months now.  My question is this?  Has anyone here ever been diagnosed with MS only to find out that it was really Sjorgen's syndrome?  I had never heard of Sjorgen's until I recently went for a second opionon on my eyes since I have seen no improvement (optic nerves look perfect; not optic neurtitis).  This dr. informed me that I may have a bit of dry eye, so I of course, immediately googled dry eye and MS and have now discovered this Sjorgen's syndrome.  I called my neuro today; he is having me go get more blood work to check for the antibodies found in Sjorgen's.  Just thought I would see if any of you and experienced simialar things?  I should mention that I did originially have blood work done that ruled out vit b12 deficiency and lupus, brain MRI showed lesions (small) and lumbar puncture tested positive for olio banding.  THanks so much and I really look forward to your opinions.
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987762 tn?1671273328
COMMUNITY LEADER
Hey welcome back!

I've heard of someone dx with Sjorgen's syndrome then found out that it was MS and someone who got dx with both but i dont recall anyone dx MS but it turned out to be Sjorgen's syndrome, oh and i do remember a lady dx with lupus and Sjorgen's. I found this article for you, interesting web site.

http://www.sjogrensworld.org/mandel.htm

I have diplopia (double vision), unilateral nystamus and the same eye has a pale optic disc but not dx with ON, i've not had dry eye, or abnormal eye pressure etc. The double vision is basically caused by the Nystagmus, mine is a rappid horizontal tremor, which is constantly mucking things up and giving me the double vision. I have it all the time now, a text eg H = # but its more obviously double if i look at things at an angle, if i look sideways at a person for example, i see an extra mouth, extra set of eyes on their forhead etc and its all just slightly off centre, freakie but still giggle worthy lol! Have you had Nystagmus investigated? Basic information on nystagmus for you to look at....

http://www.nlm.nih.gov/medlineplus/ency/article/003037.htm

Its not uncommon in the early days to question your dx, actually many people end up getting a second opinion with an MS specialist to be sure their dx is correct. Things to keep in mind regarding possibility of a missdx imho, would be the location of the brain lesions, O bands and complete sx pattern and history, as well as your clinical signs of lesions. The combination of all these things limits likely mimics and usually puts MS on the top of the list of possibilities if you also include your age and gendar.

There is no harm in being sure, you've been tossed into an unexpected whirlwind so if you need more evidence to be confident in your dx, speak to your Neuro about your concerns or concider getting a second opinion.

Cheers..........JJ

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1466984 tn?1310560608
Hi and so sorry you are having such trouble.

Neurological /autoimmune diseases are so hard to dx - and it sounds like you have some good docs who are trying to help you.  Sounds like you are on top of things.

I have not experienced what you have - am a gray area patient - dx quickly - then second opinion MS doc not so sure about MS.

There are many mimics of MS -

Sounds like you are worried - which is normal - but keep working with your good docs and doing all you can do to be healthy.  Sometimes it takes a while to get to the bottom of things!  

Sorry I couldn't be more help, but I hope someone else may chime in.
Take care.
Carol
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