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Thread: I'm new here - need your thoughts on this

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    Default I'm new here - need your thoughts on this

    Hi. I'm new to this forum, but not to lupus and sjogrens. I was diagnosed 3 1/2 years ago with latent SLE and Sjogren's. I initially had severe joint pain which led to the blood work and review of symptoms. The lupus hasn't really bothered me too much, but the Sjogrens has been horrible. I have very dry eyes. I use restasis, am on Lotemax, take Salagen. My mouth is a little dry, nothing like my eyes. I have started having numbness in my right arm at night and tingling in my right leg, sometimes hands and feet. I had an EMG last week which was normal until she put the needle in my neck and got an abnormal reading. She labeled it Cervical Radiculolopy. I have an MRI this next week.

    Anyhow, while this has been going on I went to the rheumatologist. He's new to me. Mine retired last year. I really liked him. He ran my blood work. My bloodwork came back normal, except my ANA which was 1:10,___ ( I can't remember the rest of the number :? ) They called me and said they wanted to run more tests to see what was going on. Those came back 9 days later, with everything normal except the SSA/SSB which was 163. Now, I had already spent the last 9 days freaking out about the ANA and now the high SSA/SSB. I tried to ask the nurse what this meant. She told me that the Dr. would talk to me at my next appt. Well, that's in 2 months. She said she could put me on a waiting list. Fine.

    Well, I don't think I can mentally wait til then to know what all this means. Other than fatigue and my dry eyes and a little rash from the sun, I've been ok. Is there anyone who has experienced these numbers and can shed some light on this. I'd really appreciate it.

    Jeanne

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    All I know is that SSA (also called Anti-Ro) and SSB (anti-La) are two of the many antibodies that people with lupus or sjogens may have. They seem to correlate with Sjogens specifically - which you already know you have, so I wouldn't worry too much!

    You can have various antibodies without ever having sypmtoms, or symptoms without antibodies... The fact that only those two were positive is probably good.

    For what it's worth - I've been having my right arm start falling asleep on me at night too! Its wierd! I have numbness and nerve damage in other areas that never "wakes up" but my arm wakes up when I move it around. I will be curious if you get any specific diagnosis for this one.

    Maybe we should start a new thread of all the weird and unique symptoms we all have that the Doc's never seem to believe are related!

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    Thanks for the info Sheryl. I guess I assumed that those results indicated that the diseases were very active and that something (else) was wrong. Exactly as you said, having antibodies and no symptoms.

    I have an area on my leg that is permanently numb. The neurologist said I will never regain feeling there again. Hopefully, that's where it stops.

    I'll let you know. My MRI is next week. My neurologist appt. is at the end of the month.

    Thanks again for the info.

    Jeanne

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    That is interesting - why did the area on your leg go numb? Is it related to lupus?

    I have demyelation in my spine, which makes everything from the chest down numb. This happened in March, but it IS getting better (very slowly). I don't know if it will ever totally go away, but I am hopeful!

    Good luck with the MRI. Is it spine or brain, or both?

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    At this point the area on my leg is probably due to neuropathy, which is seen in both lupus and sjogrens. I guess it causes nerve damage that at some point is not reversible. My arm numbness is either from compression issues on the nerve or is related somehow to the issue in my spine. It will be focused on my neck only, c-spine.

    Is the demyelation from the lupus? I've done a little reading and don't remember what that is. I'm glad to hear it's getting better.

    It's nice to talk to someone with related issues! Thank you!!!

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    Default Long boring reply - sorry!

    Quote Originally Posted by Jeanne1002
    It's nice to talk to someone with related issues! Thank you!!!
    Yeah, me too! I feel like a freak some days. :?

    The first indication that I had any problems was the end of March - I had a sudden attack of transverse myelitis - which is where your immune system attacks the myelin covering of your spine. It caused the numbness I mentioned. Sometimes TM is unrelated to any disease, most times it develops into MS. That is what they assumed for me until none of the typical indicators of MS were positive. The docs kept at it trying to find a diagnosis and finally came up with positive bloodwork for lupus and another one of those many antibodies, the anticardiolipin. (this is how I've learned so much about antibodies!) This antibody can cause clotting, strokes and miscarriages, among zillions of other weird symptoms. Thankfully I haven't had any of those yet - but now am monitoring and taking some precautions like daily aspirin and getting off birth control.

    People with the anticardiolipin antibody who do have strokes or clots are diagnosed with Anti-phospholipid Syndrome (APS). There is a large cross-over of people with both Lupus and APS. [Note to anyone who's read this far: if you have had clots, miscarriages, or strokes, PLEASE ask your doctor to test for APS - treatment could save your life!]

    Anyway, to make this long boring story short - my TM could have been caused by either lupus or APS - although it's fairly rare in both it does happen. The only other signs of lupus so far are the bloodwork and hair loss, but I'm on plaquenil as a general immune supressant and precaution. I hang out here on the Lupus board because its much more fun and friendly than either the TM or APS boards. :lol:

    The more I read about autoimmune disease the more complicated and fascinating it becomes - my rheumy says that lupus could probably be considered about eight different diseases, becuase there are such varied sypmtoms and antibodies, but on the other hand all autoimmune conditions seem to be interrelated, in that if you get one, you are more likely to get others. It almost makes me want to change careers and become a researcher!

    Anyway, I didn't mean to give a lecture - let us know how your MRI goes!

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