Auto-immune question

Information about how to manage or reduce the severity of BFS symptoms

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Auto-immune question

Postby JGB on December 7th, 2004, 3:45 pm

Dear All

Has anybody out there had auto-immune antibodies come back on the high side? My blood work recently revealed high ANA and anti-SSA titers. Since I didn't exhibit any of the other classic symptoms of any of the big autoimmune disorders, we weren't quite sure what to make of this.

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Postby Pasics Pete on December 7th, 2004, 6:05 pm

In October 2003, with about 6 years of twitching experience under my belt, I once again ventured out in an attempt to find out what was causing this annoying, mentally exhausting condition. Turning to a newly found physician I once again had extensive blood work done. Except for slightly elevated cholesterol levels, the only abnormality was a slightly positive ANA titer (<1:40). Next, I was referred to a Rheumy (3 month appointment wait) who ran additional blood tests and failed to uncover a positive ANA but did find a low level of thyroid antibodies. Also tested for the HLA-B27 antigen, for which I was positive.

I have been suffering from back pain and sciatica on and off for nearly 25 years and had always suspected a form of arthritis called ankylosing spondylitis which is strongly related to the HLA-B27 antigen. The Rheumy won't diagnose me with spondylitis without a MRI -- something I have no interest in doing. Interestingly enough, ankylosing spondylitis will NOT cause a positive ANA. However, I suffer from other autoimmune disorders such as psoriasis (which WILL cause a positive ANA), Raynauld's syndrome and possibly Reiter's syndrome. Originally, there was some concern that I had Lupus but that fear was dismissed after specific testing.

As an aside, I once visited an arthritis message board where a few posters complained of the same twitches and associated symptoms.

Also, two years ago I had a "melanoma-in-situ" (the non-invasive, very early stage of melanoma where the tumor is, thankfully, incapable of metastasizing) removed.

So in short, I've had a host of immune system issues for many, many years.

Yet, if I had to pick a "trigger" it would be a specific, extremely stressful event I encountered some 7 years ago (which included minor bodily injury).
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Postby Barb916 on December 8th, 2004, 12:19 am

JGB,

What does the SSA stand for in Anti-SSA? I just had some "anti" blood test done yesterday (Anti-MAG and Anti-GM1). These test are looking for different kinds of neuritis. Won't know the results for about a week yet. I'm just curious what anti-SSA is...what does it test for?

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Postby Pasics Pete on December 8th, 2004, 5:37 am

I believe the anti-SSA blood test looks for specific auto-immune antibodies that could possibly indicate diseases such as: Sjögren syndrome, systemic lupus erythematosus (SLE) and mixed connective tissue disease. I had the same test done and it came up negative.
Last edited by Pasics Pete on December 8th, 2004, 9:04 am, edited 1 time in total.
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Postby stevepaul on December 8th, 2004, 6:09 am

Pete.

Mentally exhausting, very true.

Your history is very similar to mine. 9 years of twitching, 29 years back problems including 2 opps, low level thyriod antibodies, and a non-malignant melanoma.

Arthritis and twitching. Some people with this condition who are on gold therapy, have developed PNH symptoms which stopped when treatment was withdrawn.

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Postby Pasics Pete on December 8th, 2004, 6:49 am

stevepaul wrote:Pete.

Mentally exhausting, very true.

Your history is very similar to mine. 9 years of twitching, 29 years back problems including 2 opps, low level thyriod antibodies, and a non-malignant melanoma.



Steve:

Amazing similarities.
I have little question that this syndrome is autoimmune related.
I also suspect that whatever antibodies might be coursing through our bodies are, for the most part, here to stay.

Best,
Pete
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Autoimmune

Postby stevepaul on December 8th, 2004, 11:41 am

Pete

All the evidence is pointing towards voltage gated potassium channel (VGKC) antibodies, and like other immune disorders their probably here to stay

Regards Steve.
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Postby Pasics Pete on December 8th, 2004, 12:12 pm

Steve:

My understanding exactly.

In addition, my limited understanding of anti-bodies is that once you have certain ones, you have them for life. For example, you only get the same cold once -- once you have antibodies to a specific cold virus you'll never get that same cold virus again. Problem is, there are hundreds of different types of cold viruses. Nearly the same thing with the flu -different year, different flu virus (which is why you need a different flu shot every year). In fact, the reason vaccines work is because your body produces antibodies to the disease you're trying to prevent.

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electrolyte imbalance

Postby l.e.m. on December 8th, 2004, 2:18 pm

Dear all-
I've been looking at this site for the last 18 months and can't thank everybody enough for all of the expertise. I finally decided to join after reading about the auto immune issues. My cramping/twitches were brought on by an electrolyte imbalance (sodium/magnesium). I used to be a mtn bike racer but after a long ride was rushed to the e.r. because i was cramping, vomiting and having diarrhea. I've had extensive blood work done and have seen three neurologists (emgs are clean). I have a few questions. If my auto-immune tests(7/03) have been negative am i out of the woods? should i just ignore the auto-immune postings(although amzingly valuable) and look elsehwhere. How sensitve(reliable) are these tests? My neuro says there is no indication of an auto-immune issue. Frustrated and need clarification!
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Autoimmune and PNH

Postby Davey on December 8th, 2004, 4:33 pm

If you look at the article that has been widely discussed in these forums (Hart et al., 2002), you'll see that of the 60 patients, 42 were put into group A (presence of myokymic discharges on EMG) and 18 in group B (absence of these discharges). The authors say that group A patients were classified with undulating myokymia or neuromyotonia, and group B patients were classified with cramp-fasciculation syndrome.

Of the group B patients, 67% had no evidence of associated autoimmune disorders, whereas for group A the number was 21%. This would indicate that there may be some other cause, or that the autoimmune problems might be subtle or not detectable with the tests used. I think that most of us fall into the B category, since group A's symptoms caused "mild to moderate incapacity that interfered with their activities of daily living." Group B patients found their symptoms "inconvenient rather than disabling."

Regardless, there seems to be a considerable number of patients who have no identifiable cause for BFS. You could always ask your neurologist to consult a rheumatologist to check on low doses of immune system modulators to see if that alleviates your symptoms. In the absence of a definitive cause, it is pretty much trial and error when it comes to treatment.
:wink:
Cheers,

Dave

Proud sufferer of Cramp-Fasciculation Syndrome since June 2001.

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Postby stevepaul on December 8th, 2004, 6:33 pm

Dave.

It says overall only 35% of patients had raised VGKC antibodies using the dendrottoxin immuno-precipitation assay, this is likey to be an underestimate because of the relative insensitivity of this assay compared to the molecular-immunohistochemical assay. It then goes on to say that they speculate that the serum of most of our patients may have contained VGKC antibodies.

Hart told me this paper requires updating so it will be interesting to see what the new version contains.

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Postby LeeNC on December 9th, 2004, 7:05 pm

Steve, you are our link to the most current stuff. For what it's worth. Thanks.
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To StevePaul re: VGKC antibodies

Postby Davey on December 9th, 2004, 7:49 pm

Stevepaul -

I wasn't implying that the autoimmune origin wasn't likely. I was merely pointing out the fact that many patients in the study of Hart et al. (2002) did not have any evidence of autoimmune disease. Although there appears to be a strong association between PNH and autoimmune disease, specifically VGKC antibodies, the results of their study are not conclusive.

Yes, the dendro-assay is insensitive compared to the molecular assay.
However, it was speculation to say that the serum of most patients contained VGKC antibodies, and the authors admitted it as such.

The fact remains that without firm evidence, it is still not a proven fact that the majority had VGKC antibodies. The author(s) may have a hunch or suspicion, based on their experience that the dendro-assay is insensitive, but without supporting hard evidence it remains an educated guess.

But an educated guess is better than nothing. Progress in science is made in such ways. How else would we come up with new ideas for testing? :wink:
Cheers,

Dave

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Postby stevepaul on December 10th, 2004, 8:12 am

Hi Davey.

All I was trying to point out to people was that their is another more sensitive test, other than the dendrotoxin which is the most commonly used one. Just for an example, and I appreciate this only applied to NMT patients, here is an extract from another Hart study.

"However, as dendrotoxin is not capable of blocking all members of the Shaker-related VGKC family, a more sensitive molecular immunohistochemical assay was developed that showed VGKC antibody binding in every one of 12 neuromyotonia patients but not in any controls" (Hart et al. 1997.


Now I don't want to go down the same road as the one with Dave y and maybe its the way I read things, but as I understand it, the 67% only means that people with the CFS varient of PNH are less likely to have a pre existing or develop another immune disorder but that is not to say that CFS/BFS is not an immune disorder in its own right. As you say maybe CFS/BFS is caused by something other than an immune defect. If this turns out to be the case it would tend to leave people out in the cold as far as research goes.

From another angle, it does say that 24% and 39% of patients from groups A and B respectively, had one or more first-degree relatives with an autoimmune disease, usually thyroid or diabetes so may be the immune link with CFS/BFS lies there.

Look after yourself.

Steve.
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Postby Jerry on December 10th, 2004, 10:35 am

My Dad died from an autoimmune disease called Idiopathic Pulmonary Fibrosis and my Mom has rheumatoid arthritis, so I am very interested in this autoimmune research. I wonder how many other people on the board have relatives with autoimmune diseases?
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