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Old 01-12-2010, 12:43 PM #11
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If you have CTD, then the PN is highly likely to be a result of that.

There are so many CTDs and really there is some thought as to them all being on a continuum. Sjogren's can be anything from dry eyes to life threatening....Sjogren's and Scleroderma (systemic sclerosis) share a gene, and the two are very closely linked. Mixed Connective Tissue Disease is at this point considered seperate but possibly a pre-scleroderma stage....There is CREST, Lupus, RA, psoriatic arthropathy or arthritis, etc....

Just knowing that you have any autoimmune process going on makes it highly suspect. Antibodies direct the doctor in a direction, but all have crossover. An ANA by immunofluorescence is the best kind of ANA. Elisa does work, but, provides little info. The ENA may be negative, but that means it is only negative to the known antibodies for a given disease....there are many, many antibodies that cause CTDs.

My rheum says that neurological complications of CTDs usually respond to IVIg, but that they are very slow to respond. Obviously, then you are also in a fight to keep it going, forever.

Now CTD doesn't rule out other causes either, but once you have an autoimmunce diagnosis, docs tend to park themselves there. Finding ONE cause for neuropathy is a breakthru, let alone looking for and finding a second one. So many people do not find any cause, and it is frustrating.

PN and dysautonomia is thought to be under recognized in autoimmune disease. It is just now coming to light.

My autonomic system is really badly shot.

Not all autoimmune disease produces frank arthritis. One gets osteoarthritis, because the ligaments and tendons don't hold the bones in place properly and they wear badly. It is quite painful. Also the soft tissues may swell and cause things like carpal tunnel.

Many produce tendon and ligament changes....Sjogren's, Scleroderma among the worst offenders in that respect....they affect bursa, tendons, ligaments, muscles, fascia, etc....connective tissue. Carpal tunnel is a clue to Scleroderma, for example....and not all scleroderma produces major skin changes, ala, scleroderma sine, which is now more common than originally thought. Calcium can deposit in the tissues too.

I would not get too worked up over an ANA at the 1:80 to 1:160 range. Over 1:160 is generally clinically relevant if it is always high and you have symptoms. 1:640 is quite high....1:1,280 is very high and most labs don't measure over that. The other thing they look at is pattern. Pattern can give direction. ANA can spike due to infection, but it should return to normal after the infection is gone.

Sounds like your neuro is a gem and understands autoimmune disease. So is mine. Without him, I would not have gotten to this point....the neuro and a lot of persistence. He suspected autoimmune disease from the getgo, but, I did not have a + ANA for a while, so figured that it was not that. He was right.

My dysautonomia is caused by the CTD. My small fibers have been attacked by my own body, and now nothing works right. Yes, I have the joint issues, but not RA. I have constant problems with all connective tissues. I have myopathy too. GI issues, lung issues, diastolic dysfunction.

Yes, the screwed up chemicals from autonomic damage do cause weird emotional overlay. I know exactly what you are speaking of. I get it too. It is transient and passes. If you have dysautonomia, think twice about adding any drugs to treat emotional issues....most of those drugs have systemic effects that will cause problems. I try to remind myself, when one of those odd emotional things hits, that it is disease, and it will pass....and it does.

CTD can also produce CNS problems with emotional issues. It is a double whammy. Vasculitis can accompany CTDs and this too can cause brain issues.

I hope you can find answers and that you feel better.
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Old 01-12-2010, 03:29 PM #12
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Cyclelops, you are very wise. Thank you for this...
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