RichGotsPots

Well my dr's appeal was denied. He said the dr for the ins company was a jerk.

But now I got a Sjogren's diagnosis, maybe gonna try to get it through my Rheumy..

Thnx everyone! i will certainly keep ya posted

Not everyone is positive for the AAG antibodies.. Mayo did a study on a few AAG patients and half in the study were negative for the antibodies. Also Mayo reported that IVIG or Plasma alone was not as good as a combo of meds and one of those at the same time.

AAG is like CIDP's baby brother.. Hopefully one day it will be easier to get treatment for it.

Diabetic did u get treatment at one of the 5 major hospitals in the consortium doing trials of IVIG?

My lip biopsy came back positive for it. So now I have autonomic neuropathy and Sjogren's. most likely Sjogren's cause the neuropathy. Hopefully it will lead to better treatments..

I don't think I will see Dr. Freeman , but I was curious because he seems to be writing the bulk of the research on Autonomic Neuropathy and yet I keep hearing negative clinical visit reviews.

Just curious how he is...

Here is the link to the polls:

http://forums.dinet.org/index.php?/topic/20096-part-2-dysautonomia-breathing-related-issues-and-treatments/

http://forums.dinet.org/index.php?/topic/20049-dysautonomia-breathing-related-issues-and-treatments/

Bad news, insurance denied it :/ my Dr. Is appealing it, will let update you as soon as I know.

I'm always nervous about my breathing problems becoming worse from anything..

Very cool.

Usually the antibody test is sent away to Mayo. But there are 50% that are negative and they go on the small fiber neuropathy finding along with other clinical evidence.

Exercise that helps us has nothing to do with the heart Or deconditioning. There are a bunch of things that mimic POTS and deconditioning is a totally different "condition" than POTS. Astronauts that are deconditioned get autonomic dysfunction and so do some elderly people in nursing homes. They do rehab and improve quickly. There aren't a bunch of astronauts walking around with POT or else we would get some great PR lol

Meanwhile POTS and autonomic neuropathy are caused by many illnesses. For example Diabetes. Everyone knows that exercise helps Diabetes. Once you treat your cause you will start to get some relief. And almost all debilitating illness are helped with exercise. Next to diet exercise is the biggest predictor of longevity. So yeah it's always good to exercise some what.

But I'm also in the group of ppl who were pushing the limit of exercising when I first became ill and 3 years later when I had my major relapse I was starting to work out hard again. So I have a feeling that there is a very fine maximum line to our exercising that is not the same as other. And BTW I had several echos and I dont have a small heart in any way!

I'm probably the biggest sufferer of this scary symptom. It's believed to caused from a drainage of blood from the lungs. I have a huge poll with about 80 responses on here from about a year ago. Everyone says their triggers, how theirs feels and what meds make it worse or better.. Try running a search for breathing problems or loom under my older posts. I suffer from it so bad thats i'm on disability and homebound from that symptom.. There are generally two type one is like a breathlessness sometimes with chest discomfort and another is like we forget to breath.. I really believe its from autonomic nerve damage to our lungs.. See a rheumatologist and get checked for autoimmune issues and not just blood testing..

My neuro order IVIG last week and I'm waiting to hear back about approval.

I'm pretty nervous about taking it

@Issie that seems old information, to me. But any leep an eye out for my new posts. I'll try to include picturs to help everyone visualize.

Keep an eye out for a new post that will further elaborate on my theory, just more pieces, hopefully up by this week. Been really digging in. Also soon to follow that is mew potential tests for my theory and pots not general test but tests on small fibers..

What an interesting thought! It could evolve into a sort of dysautonomia Olympics The 10 yard dash surrounded by men wearing "axe body spray", (this makes the floor go up and down for me!), a 2 minute stand and sway with the noise of a vitamix going (makes my scalp tingle and dizziness follows), walking a simple obstacle course in a dimly lit room with the "action" movie Ice Age in the background (a true recent experience at my daughter's school movie night - the movie coupled with the kids playing with flash lights almost paralyzed me! I had such a difficult time planning and taking each step. It was as if my system turns itself down to tune out all the over stimulation!)

Wishing you all a relatively easy day ...

Haha made me laugh and smile thnx!

Rich, a comment and a question:

1. After reading what I did above about your reaction to animals and I'm reminded of your symptoms I would not rule out MCAS just because you didn't respond to H1 and H2 blockers. PM me if you want more info on why.

2. Is it possible that the reason the QSART doesn't pick up SFN in so many is because like many other autonomic reflex tests it is looking for an absence os sweating and does not recognize an overreaction to sweating? (figure w all your research you would know!)

Kelly,

1. I also tried singular as well with no affect. My point with the new dog crazy allergy is that I can distinguish it from my normal pots breathing problems and they are nothing alike. Even if mast cells are involved I think its more in response to a large immune issue.

2. Going to have so new posts digging deep into fibers and what not so keep an eye out, dont want to spoil it just yet

Rich, I just got back back from the doctor and he said I have it .The biopsy showed that I have it pretty bad. He wants me to go for another biopsy I was crying so much that I can't remember what the new one is for. : ( I'm having so much pain in my chest , flank and back. He thinks it may have taken over my GI system and bowel as well. Everything is really starting to make sense.

Bella, I'm so happy you are getting closer to more answers and now any doctor will take you much more seriously. Keep an eye out for my new posts on the subject.

Does anyone know where Ruby went she hasnt been on in over a year?

They usually use thermography to detect breast cancer but they warn that its not an early detection system for that. A lot of alternative medicine practitioners use it but it also has allopathic uses so I think it would apply in both cases for us. And I think which modern computers analysis it could be tinkered with to be ultra sensitive enough to be useful..

http://www.neurology.org/cgi/content/meeting_abstract/78/1_MeetingAbstracts/P05.203

C1 Autonomic Disorders: Orthostatic and Autoimmune Disorders

The Pathophysiology of Neuropathic and Non-Neuropathic Postural Tachycardia Syndrome (P05.203)

Christopher Gibbons1, Istvan Bonyhay2, Adam Benson3 and Roy Freeman4

1 Beth Israel Deaconess Medical Center Boston MA

2 Neurology Beth Israel Deaconess Medical Center Boston MA

3 Neurology Beth Israel Deaconess Medical Center Boston MA

4 Neurology Beth Israel Deaconess Medical Center Boston MA

Objective: To define the clinical characteristics, fatigue severity, autonomic function and differentiating factors in individuals with neuropathic and non-neuropathic POTS.

Background Postural tachycardia syndrome (POTS) is an increased heart rate in the upright position with orthostatic intolerance. Some patients with POTS have an underlying small fiber neuropathy.

Design/Methods: Fourteen patients (10F) with POTS and 8 healthy control subjects (5F) underwent skin biopsy analysis of intra-epidermal nerve fiber density (IENFD), quantitative sensory testing (QST) and autonomic testing. Subjects completed quality of life, fatigue and disability questionnaires. Subjects were separated into neuropathic and non-neuropathic POTS, defined by abnormal IENFD and/or heat and heat-pain detection thresholds. Differences in autonomic function and symptom questionnaires were analyzed by t-test with corrections for multiple analyses. Significance set at P<0.05.

Results: Participants with POTS had lower IENFD at the distal leg and distal thigh than control subjects (P<0.05) but no differences in quantitative sensory testing. Participants with POTS had significantly greater fatigue, anxiety, physical impairment, orthostatic intolerance and perceived disability than controls (P<0.0001 all questionnaires). Seven patients had neuropathic and seven had non-neuropathic POTS. Neuropathic patients had higher supine blood pressures (P<0.05), with higher heart rates (P<0.05), lower 30:15 ratio's (P<0.05) and lower Valsalva ratios (P<0.05). There were no differences in any self-reported questionnaires between neuropathic and non-neuropathic POTS.

Conclusions: Patients with neuropathic and non-neuropathic POTS have a similar symptom profile, fatigue level and disability. POTS subtypes can only be distinguished by evaluation for small fiber neuropathy. There were differences in autonomic tests (higher blood pressure and heart rate, lower 30:15 and Valsalva ratio) consistent with underlying small fiber dysfunction. These findings suggest that neuropathic and non-neuropathic POTS have different pathophysiological mechanisms that underlie the postural tachycardia. These findings have implications for therapeutic interventions to treat this disorder.

My idea is with a heat sensing camera kinda like the Predator had lol

Issie your Dad got IVIG?

Matt, back when I was first dx with pots in 2011 I was looking everywhere, so an immunologist/allergist ran an immune panel for a bunch of things and is showed up.. They have averages for when you get the lab results..

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883091/

GBS and CIDP are the same illness but CIDP is the chronic form. CIDP is like dysautonomia on to the extreme. They have dysautonomia/small fiber neuropathy but on top of that they large fiber neuropathy as well that weakens their muscles like a typical neuromuscular disease. Their first line of defense, to rebuild fibers both small and large is IVIG, because their neuropathy is caused by the immune system.

This study is important because like me a few ppl on here have said they also tested low for IgG and this study points to recovery speed and effectiveness being related to IgG levels after IVIG is given. So if a patient has low IgG levels before they get IVIG and then 2 weeks later their IgG levels are retested and have not gone up then its related to worser outcomes.

Now most of don't have this illness, but many of us that the small fiber neuropathy component of this illness. So if you do manage to get IVIG then just wanted to make you aware.