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Old 11-11-2010, 09:02 PM #31
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Basically, I think three broad categories (within which are sub-groups) are being told they have Sjogren's.

One is the Serum Positive Group, which contains those with either a +ANA, with or without SSA and SSB and + Lip biopsy in the mix. Aggressive 'nonerosive' arthritis of the small joints, Sicca and systemic effects such as nephritis, dRTA etc. Many of this group has comorbid small fiber neuropathy.

Another is Sero-negative, and these people have + Lip Biopsy, Sicca....My bet is ALL of these people have PN, likely autonomic.

The other is Sero-negative, with negative Lip biopsy and Sicca....and quite possibly PN

There is a 4th group which if explored would have medication induced sicca. Let's ignore this group...since they usually won't go for diagnostics any way...they just insist they have SjS.

The 3 could be completely unrelated, all 3 have a 'Fibro' like presentation with aches, pains (due to PN), arthropathy due to proprioceptive problems which lead to accelerated joint wear, strains etc, and dysautonomia....therefore appearing very much the same, but, in reality, being very different.

The SjS of neuropathic origin IS different in pathogenesis than the SjS of exocrine and systemic inflammation.....The name needs to be changed. I believe in the near future, 5 years or so....The SjS of the first category will be assigned to the 'Lupus' category, and the idea that Lupus can simply be an ANA+ disease with ALL organ systems affected. I don't believe that Lupus or SjS or any disease can affect major organs and NOT produce small fiber.
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Old 08-31-2012, 12:36 AM #32
MalindaK MalindaK is offline
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Quote:
Originally Posted by cyclelops View Post
Basically, I think three broad categories (within which are sub-groups) are being told they have Sjogren's.

One is the Serum Positive Group, which contains those with either a +ANA, with or without SSA and SSB and + Lip biopsy in the mix. Aggressive 'nonerosive' arthritis of the small joints, Sicca and systemic effects such as nephritis, dRTA etc. Many of this group has comorbid small fiber neuropathy.

Another is Sero-negative, and these people have + Lip Biopsy, Sicca....My bet is ALL of these people have PN, likely autonomic.

The other is Sero-negative, with negative Lip biopsy and Sicca....and quite possibly PN

There is a 4th group which if explored would have medication induced sicca. Let's ignore this group...since they usually won't go for diagnostics any way...they just insist they have SjS.

The 3 could be completely unrelated, all 3 have a 'Fibro' like presentation with aches, pains (due to PN), arthropadthy due to proprioceptive problems which lead to accelerated joint wear, strains etc, and dysautonomia....therefore appearing very much the same, but, in reality, being very different.

The SjS of neuropathic origin IS different in pathogenesis than the SjS of exocrine and systemic inflammation.....The name needs to be changed. I believe in the near future, 5 years or so....The SjS of the first category will be assigned to the 'Lupus' category, and the idea that Lupus can simply be an ANA+ disease with ALL organ systems affected. I don't believe that Lupus or SjS or any disease can affect major organs and NOT produce small fiber.
I have had Fibro and CFS for over 20 years. If you think fibro is miserable with accompanying Chronic Fatigue Syndrome (my IGF1 or Human Growth level is lowest in my test group at OHSU) then try having 4 spine surgeries in 5 years. The interior scar tissue is really bad in with the mayo-facial pain.

I have a really good Physical Therapist who is manipulating it in an attempt to release the pain and confusion it causes the new places who have to take over the work that used to be done in another way. (like the back rotator cuffs) it causes. The latest, C2 to T3 is beyond imagining.

I have had to have spinal denervations in order to be able to walk upright. I was just told today that my Sleep Apnea may in part be getting worse of the scar tissue and surgeries.

So, do I have Fibro? or these new things you are talking about?
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