The Seesaw
 

:)

After seesawing for months trying to find out for sure what exactly has caused the NLD SFN, have finally and fully accepted the diagnosis of Sjogren's Syndrome made last February as the cause of it.

Saw the rheumatologists yesterday for the first time in six months. They laid out the case very convincingly for primary Sjogren's point by point.

Guess I kept flailing for something else because there's no cure for Sjogren's and kept hoping something that was "fixable" would pop up.

Does anybody else here have a definite Dx of Sjogren's and non-length dependent small fiber neuropathy?

I do not have those problems, but I do have a question.

I know that if it the cause is something like an autoimmune disease or something that can be treated or cured, the original cause would cease to exist. But, would the PN just go away along with it? Because everything I have read points the other way--even if the original cause is taken care of, the PN is here (usually) for life and while the symptoms can be controlled to some extent, the PN cannot be cured. Is that not the case?

I got PN from being too low in Vitamin D (and possibly B12, though it wasn't low until after I was already diagnosed with PN). My Vitamin D level is back up to normal and yet the PN continues to stay the same. I treated the original cause, yet my PN symptoms have not gotten better even a tiny bit, and have definitely not gone away totally. It was my understanding that this was the case all of the time. Maybe that isn't correct?

Are there other things that the Sjogren's causes besides the PN? Are there ways to treat the Sjogren's, even if it can't be cured?

Most people seem to really want to know the cause, so I am glad that you have figured that out... but wish more than that, that the symptoms could go away for you!

AI disease is not all that treatable in many cases. It can range from very mild to very severe, with multi-organ damage...my kidneys just got nailed....after many other organ systems have had problems.

Nope, the PN doesn't reverse.

I too have the Sjogren's Diagnosis.....I have + lab work for autoantibodies, except not the specific ones for Sjogrens. Mine look more like scleroderma or Lupus, with a low C4 and nucleolar pattern. All I know is something AI is going on.

How is Sjogrens diagnosed for you guys.
I have had twice Ana was borderline and other hundred times negative but sed rate always elevated.
The specific antibodies to this is negative but years ago c4 and c3 mildly elevated but the rhumatologist just says these numbers are to insignificant.

She said I could possibly have lupus like going on.

My vitamin d Is extremely low and she wants me to go to kidney doctor as vitamin d is worked up in kidney I guess. Plus I have had blood in urine for years and that might give clue to cramps and neuropathy.

Geez, Tulips - wishing you to doctors who will take your case in hand and do something about it. You have serious issues.

As to how Sjogren's is diagnosed - no expert but Inga is.

Mine was diagnosed clinically - the extremely dry skin, dry eyes, dry nasal passages, dry cough and by skin biopsy that showed non-length dependent small fiber neuropathy and by saliva gland (lip) biopsy. The lab work last January and up through July was all normal. In other words, the markers for Sjogren's and/or other autoimmune diseases were absent in my bloodwork.

I, too, don't think the neuropathy will ever go completely away because the underlying cause is an incurable autoimmune disease. And even if there were a cure for it, that doesn't mean that the nerves would fully repair. Am just thankful there's recently been as much neuropathy improvement as there is.

Thanks, Sarah Mae, for your good wishes. Many returns to you, as well. Maybe somebody all of these afflictions will be history - hopefully during the lifetimes of the younger ones among us.

Mine was not fully diagnosed until I got a highly + ANA >1:1280, and LOW C4. Complements are typically low in AI disease...since as they are used up, they get low. My CD4/CD8 ratio is high, as in high T cells. I also had a highly + lip biopsy. Most rheumatologists are not real excited about diagnosing AI disease without the autoantibodies. Most rheums still blow me off, despite meeting all the criteria. It's fine, they don't do much for me anyway. My neuro does.

I would say your low Vit D is a bigger issues....see your kidney doc. I ended up with low Vit D and distal renal tubular acidosis. That issue can be fixed, and low Vit D can result in osteomalacia, and severe bone pain....and I mean severe! That is where docs kind of messed up and missed this....thought it was neuropathy.

Keep in mind that autonomic neuropathy causes sicca syndrome....my theory is kidney issues can too. Other than the kidneys...that calcium has to go somewhere! Just a theory.

Go see the neprhrologist.

Any idea how long it takes before Vitamin D deficiency can cause other problems?

Mine is back up to normal... but I still worry that it could easily slip back down, so I am a bit annoying and ask my doctor to order blood work nearly every month, even though he doesn't feel it is necessary to check that often.

Since I only have one good kidney, I also have him check kidney function when I do blood work as well, but it always comes back as functioning fine.

I will have to do some more research on low Vit. D and what it has been linked to.

I don't fully understand why people seem to work so hard to get a diagnosis.. because in the majority of cases, it seems like knowing the cause doesn't change a single thing... so people finally find out and then they just end up spending years and lots of money on it, only to find out they can't change the outcome anyway. I realize this isn't always the case... sometimes there are causes that can be treated. For example, someone with diabetes could change diet and exercise and try to shed the diabetes... but the PN would still be there anyway. That's what I'm trying to say--knowing the cause is good if the cause is something you can get rid of, but so often it is not.

Sarah Mae -

To answer your question about what else Sjogren's can and does cause:

1. Destruction of the exocrine system to greater or lesser degree which is what causes the dryness. One doc has called SjS "lupus of the mucosal system."*

2. NLD SFN*

3. Dry cough.*

4. Major organ problems (kidneys, pancreas, liver).

5. Overlapping AI's (scleroderma, sarcoidosis, rheumatoid arthritis, lupus).

6. Central nervous system issues.*

7. Extreme fatigue.

8. Lymphoma in about 10 - 20% of primary Sjogren's people.

9. Hashimoto's thyroiditis.*

10. Etc.

Am really glad I can stop searching. I'm one who always has to know the reason why if at all possible.

Hope you do see some PN and other improvements - don't give up the ship.

* I have these.

Vit D is not a vitamin. I have that information on the Vit D video thread on our vitamin forum.

There are some links to minimizing autoimmune issues when it is working well in the body. Blocking the development of diabetes, and helping MS are two areas showing up.

from http://www.ncbi.nlm.nih.gov/pubmed/17699936

Also this:
http://www.vitamindcouncil.org/researchAutoimmune.shtml
papers on autoimmune issues and Vit D.

I don't fully understand why people seem to work so hard to get a diagnosis.. because in the majority of cases, it seems like knowing the cause doesn't change a single thing... so people finally find out and then they just end up spending years and lots of money on it, only to find out they can't change the outcome anyway. I realize this isn't always the case... sometimes there are causes that can be treated. For example, someone with diabetes could change diet and exercise and try to shed the diabetes... but the PN would still be there anyway. That's what I'm trying to say--knowing the cause is good if the cause is something you can get rid of, but so often it is not.[/QUOTE]

hi Sarah
Believe me you would still be looking for a cause if you didn't know what was wrong with you, I have been diagnosed with so many ailments before PN and there is the outside chance this could be fixed so I need to keep looking for a definitive answer.

Sheltiemom, I am so sorry about your news but hopefully your good spells will continue, have you had any more days of decreased sensitivity?