Dysautonomia Among Patients With Primary Sjögren's Syndrome

[tachyfor50years]

Here is a study which was published recently:

http://ard.bmj.com/c...011-201009.full

[kjmom]

Interesting. Before my daughter was diagnosed with POTS and EDS, her ANA came back positive with a positive Sjogren's test. The rheumatologist passed it off as a false positive but this makes me think...

[tachyfor50years]

kjmom,

Does she have this syndrome's symptoms?

[bellgirl]

My neurologist tested me for this, but I was negative for sjogren's.

[kjmom]

Well, she's had pretty itchy eyes but I always thought it was allergy related. She also has rashy skin, fatigue, joint pain bt those could be attributed to her other illnesses too.

[Birdlady]

Thanks for posting this! I have a positive ANA, but negative for Sjogren's for the time being. You never know what the future brings though...lol

[RichGotsPots]

40-50% of people with Sjogren's test negative for ANA or any blood tests, only lip biopsy is 100%

[bellgirl]

Rich, I believe what you are saying is true, but many doctor's don't do the lip biopsy, and I don't understand this. I have to make an appointment with a rheumatologist now because they think I have fibromyalgia...I thought everyone with Dysautonomia had fibro...still learning...

[RichGotsPots]

Rich, I believe what you are saying is true, but many doctor's don't do the lip biopsy, and I don't understand this. I have to make an appointment with a rheumatologist now because they think I have fibromyalgia...I thought everyone with Dysautonomia had fibro...still learning...

Kim I recommend you find a Rheumy show specialies in Sjogren's the Sjogren foundation has support groups for every state and you can ask them for a local doc recommendation or PM with your city and state and I'll find one for you..

[arizona girl]

Hi guys, I had a lip biopsy, it wasn't to bad. I have many symptoms of sjogrens, but my biopsy while showing infiltrates, they weren't high enough to confirm sjogrens. The one draw back to the lip biopsy, is it doesn't catch sjogrens early enough, by the time it shows up on lip biopsy, you've probably had it for a long time undiagnosed.

Don't know if any one is aware but rheumatologist have had a new diagnostic code call undefined connective tissue disease UTCD. They use it for patients that have some markers and symptoms of autoimmune disease, like ana or ssa, etc, but are not yet positive for the other criteria to diagnosis sjogrens or lupus.

The good news is that they offer the same types of treatments for UTCD, as they do for specific autoimmune disease. Symptoms of fibromyalgia like pots are usually caused by another underlying illness.

I speak from experience on this. I have utcd and several other immune disorders and I was misdiagnosed with fibromyalgia for years, and continued to get worse, inspite of fibro treatments.

[bellgirl]

If you don't mind me asking, Arizona girl, did they find out what was causing your nerve pain? I'm just about ready to make my appointment, and could maybe benefit from your experience with this. I went years ago, and they never found anything, and I'm just not wanting to go to another doctor right now!!

[arizona girl]

Not at all, if I can help someone else get a faster diagnosis then the decades it took me, then it will make my struggle worth it.

Most people are familar with small fiber nerves because of diabetic neuropathy. There are several small fiber nerves that can be damaged, sensory and autonomic. I actually had autonomic symptoms first and then the classic kind described in diabetic or perpherial neuropathy. While sfn was first found in diabetic patients, they are now finding many other conditions that cause it, like high insulin levels and autoimmune diseases like sjogrens.

I was normal for the basic large fiber neuropathy testing, you know emg's. The thing is if you have large fiber involvement it is fairly obvious because those control your muscles and you won't be able to move right. I guess emg would confirm that type.

Even though I have pain and did have classic pain and vibration in my arms and legs when lying down after being up right for a while. My emg was normal so I got diagnosed with fibro. Only after reading here on dinet about small fiber neuropathy, was I able to ask that neuro who now had evidence of a failed TTT and who just did another normal emg; What about SFN? Magic words, he sent me to Dr. Levine who's office specializes in the small fiber skin biopsy. That biopsy came back abnormal both times it was done. There not alot of neurologists who specialize autoimmune neuromuscular disease, if you can find one that knows about the skin biopsy and small fiber nerve involvement then you have a good chance of getting diagnosed.

You can google small fiber neuropathy, autonomic neuropathy, autoimmune small fiber neuropathy and there are a bunch of papers out there describing it and the skin biopsy. My doctor with his associate have several under levine and saperstein.

Hope that answered your question. Happy to answer more if need be.

[bellgirl]

Thank you for taking the time to answer my question, so fully. Yes, I have heard of small fiber neuropathy, but I told my neurologist about my nerve pain. He checked my reflexes, as always, but never mentioned the test. My Autonomic Nervous System doctor told me to go to a Rheumatologist to have RA ruled out first. I went to one when I first had symptoms 14 years ago, and they tested me for a lot of things; I'm sure that was one of the tests they did. I don't have joint pain or swelling, so I know it's not that. Evidently, Vanderbilt checks for small fiber neuropathy, but don't treat; they just do research. All I know is that I was in some major pain for about 5 years on one side of my body for about 5 years that subsided (couldn't even touch me after a virus) at first, then it went away, then 2 weeks ago, I got it back. My PCP will do some blood work within the next month; I will ask her to draw extra for an EBV titer, because I have my suspicions, that it could be related to that, as well. But I also get major aching, as well, like I have the flu, which could also be related to a virus. I was checked for Lyme, when I was first diagnosed a year ago by my neurologist. It lasted for about 2 weeks this time, but one night I was literally incapacitated by it; I had to go to bed. Today, I'm fine...have some residual, as always, but I feel I've developed a high threshold for pain!! My rigidity is worse, too, so I'm trying to half my beta blocker twice a day, and increasing my klonopin to a tiny dose during the day per dr. order, of course, but that isn't for nerve pain. I thought she might give me cymbalta or neurontin, but she would prefer not treat until she knows what's going on. Everyone is so specialized that my PCP does more blood work than the rest of my doctor's combined. She's the one who gave started me on my beta blocker, angiotension antagonist, and diagnosed my D3 deficiency (although I suggested she test me for that). She also tested me for myasthenia gravis, and ordered an MRI, because of my dad's aneursym history. Sometimes I wonder, whose doing the diagnosing. I finally told them all the supplements I've been on for months now, that I decided that I needed, and they have helped me immensely!! Thanks again

[arizona girl]

I agree with your doctor best not to treat, until you know what your dealing with. The other tests for sfn are qsart and the thermal heat tests where they coat your body and put you in a hotbox. As sfn can be patchy, qsart along with skin biopsy will usually catch it. Not surprised sfn is not even on most neuros' radar, and the skin biopsy is now the gold standard. It also pretty symetrical, not one sided. I did have that all over achey burning fluey body pain. FYI, I now know that means I have an infection and my wbc is usually elevated when I get that way. Do you get a cbc done when your acting up? Thank goodness, I haven't had that happen in a while. A rheumy should also test you for more then just arthritis, like lupus and sjogrens, vasculitis, etc. You might also mention utcd, if your blood shows mixed results.

I have resisted taking the cymbaltas and lyricas, due to their side effects. I also think they are aimed more at symptoms then cause. While you may not be able to find your cause in the end, it is still worth ruling out all possibilities.

BTW I also went to vanderbilt and as they are mostly looking at pots from a cardiovascular point of view, you are right they don't, treat it, other then with salt loading and hydration and betas. Non of those worked for me as I was hyper and as it turns out my dysautonomia was a result of a messed up immune systems. Not sure which of my illnesses caused the neuropathy, as any of them could have.

I was trying to follow your post, sounds like you feel that your dysautonomia is being caused by a possible virus? I did get virus ruled out by going to infectious disease. Consider that maybe. I did however have elevated wbc's and about 5 years of very low grade fevers that came and went daily. Since we've been treating first with antibiotic shots and then with ivig they have gone away, except when I've had elevated wbc with signs of infection. Which has only happened twice since starting ivig. My wbc are down in the 8's now after being around the high end of normal or going up to the 20's with infection. Even with colon ruputure my temp only got to 100.2. So, if you feel like you have a fever, but aren't really registering one, that is another symptom to consider.

I'm just throwing this stuff out their, because as you can see my course to diagnosis was very complicated and like an onion we kept finding more layers. Perhaps something will jump out at you, and give you a direction to pursue.