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Everything posted by ~Naomi~

  1. Oh wow, Sue! I can only imagine what it would feel like to have a clear brain and return to "me" again. I totally get what you mean by that. I hope this lasts for you. Keep us posted.
  2. Nothing has been published. Subjects were sent a letter in July 2015 with an update stating there were issues with the test (paraphrasing) and they were developing a better test. I think this is okay to say since Dysautonomia International made the letter public. I don't know how to share it, but it's still on their Facebook page - August 21, 2015 if anyone is interested in reading it. There has been no further update. Have to say.. this has been a long, torturous wait and I hope something is released soon.
  3. Yes, I believe healthy people can have the antibodies too, but the activity levels may be significantly higher in POTS.
  4. Looks like there's more work to be done and they explain a bit about that. If you go to Dysautonomia International's homepage and scroll down a little, the info is there. Or below is a direct link to the letter which was sent to all study participants and posted on their site. Just so everyone's in the loop... ‚Äč
  5. I have itching due to small fiber neuropathy. It happens mostly at night, jumps around my body and is not associated with rash. Very annoying symptom. There is an abstract about it, but I am unable to paste anything here. Why is that? Anyway, if anyone wants to look it up.. the title is "Pruritus: an underrecognized symptom of small-fiber neuropathies" by Brenaut E., et al. Conclusion is: Pruritus occurs frequently in patients with SFN and could be recognized as a possible presenting symptom, especially if there are other sensory or autonomic symptoms.
  6. I have classic SFN sensory symptoms (burning feet) and POTS. I had a very positive skin biopsy, but a few months later a repeat skin biopsy and then another (long story) came back negative. There was no treatment in between and no change in symptoms. I was perplexed as SFN explained many of my symptoms so well. I then had a QSART which was very positive and positive again on repeat. I was diagnosed with SFN and they believe autonomic neuropathy is causing the POTS. It was explained to me (as Jensen said) that neuropathy can be patchy and therefore biopsy can miss it. I've heard before of other people having positive skin biopsy, negative QSART and vice versa, so I too think people should have both tests. It may not be SFN, but since you do have nerve pain and dysautonomia, I'd want to make sure. See if you can get the QSART. Another one I've heard of is a TST (thermoregulatory sweat test?), but I don't think it's widely available.
  7. The burning sensation started in my feet years ago and happens nightly. It has since progressed to my hands and I get sensations of burning or wetness on other body parts which come and go and move. SFN and POTS often go together which is why it's good to be evaluated for SFN.
  8. Definitely ask about small fiber neuropathy. I have it and get sensations like you're describing.
  9. Yes this started happening to me a few years ago, but hasn't happened in a while (I probably just jinxed myself). I found it happened more often going from outdoors to indoors. I'd walk in and the room looked full of smoke. Brain scans are normal and eye exams are fine except for extreme dry eye, I produce practically no tears. The eye Doctor decided dry eye must be the cause, but I don't know if that's right. Anyway, sorry no answers, just wanted to say - me too!
  10. I have the EDS, dysautonomia, SFN combo too. It seems like there is beginning to be some good evidence for SFN in EDS, but more research is needed. Here are a few studies addressing this. http://www.ncbi.nlm.nih.gov/pubmed/24507822 CONCLUSION from above: Dysautonomia consisting of cardiovascular and sudomotor dysfunction is present in EDS-HT. Neuropathy, connective tissue laxity, and vasoactive medication probably play a role in its development. http://www.ncbi.nlm.nih.gov/pubmed/24968706 From above: By contrast, the correlation of the GHQ (r = 0.298) and PDQ (r = 0.413) with the ASP supports the hypothesis that joint hypermobility and neuropathy may play a role in the development of autonomic symptoms.
  11. I think I misunderstood your post and thought you were asking the possible link between EDS, neuropathy and POTS. Sorry about that! And I assume we're talking about small fiber neuropathy here? If your rheumatologist wasn't concerned about the neuropathy does that mean there was no investigation into what could be causing it? I would hope they have looked for possible causes, such as autoimmune conditions, Lyme disease, vitamin deficiency etc. etc. (there are so many possible causes of SFN). I'm not sure a cardiologist would be the one for this kind of investigation? A good autonomic neurologist or neurologist with specialty in neuro-muscular disease (neuropathy) with knowledge of dysautonomia would probably be better. I've only settled on EDS as a possible explanation in my case because I've ruled out just about everything else that can cause SFN.
  12. This is something I've been thinking a lot about too. They've recently started talking more about the connection between EDS and neuropathy, with neuropathy being the possible cause of dysautonomia. Why neuropathy occurs in EDS, I don't think they know. Could be autoimmune or I wonder if it has something to do with the relationship between connective tissue and nerve. There are other genetic conditions where neuropathy appears later in life, so maybe it's somehow built into the equation. I'm hoping now that they know neuropathy DOES occur in many EDS/POTS people they will start to explore why. http://www.ncbi.nlm.nih.gov/pubmed/24968706 http://www.ncbi.nlm.nih.gov/pubmed/24507822
  13. POTLUCK, they did take blood samples from patients at the conference and the larger study is moving forward.
  14. I hear you Goschi. There was a time when my comments about this would have been a rant with lots of exclamation points. I can fluff it off a little better now, but I do still worry that stuff like this hurts us with Doctors. We struggle enough getting them to take us seriously. I can picture a Doctor based on this article recommending psychological therapy to improve cognition. Also, I wish they would stop wasting money on this type of research and put it towards figuring out what is physiologically wrong with us instead.
  15. Here we go again... somatic hypervigilance as partial explanation. I can't think clearly (even when NOT standing) because something is physiologically wrong, not because I am depressed, anxious or overly focused on my symptoms. Amusing too that the POTS study participants HERE were 'less educated,' whereas there was a recent article out of the UK highlighting POTS patients' higher levels of education. There was some interesting info on hormones though. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4070177/
  16. I really appreciated the last two paragraphs... acknowledging that we're very sick, how debilitating this can be and that some of us (I'd argue many) don't get better, some get worse. They highlight the need for better treatment, increased awareness and a focus on finding out what causes this. I don't like when articles portray POTS as easily manageable and benign. This one didn't do that.
  17. So glad you made it through ok and that you aren't in too much pain. Please update through your healing process when you can. ((hugs))
  18. Warm, loving thoughts for you, Katie. I hope all goes well. Please post an update whenever you're able to. Will be thinking of you tomorrow.
  19. They will be testing POTS patients at the DI conference in July. If you go to DI page, there is an update posted about this.
  20. Had to share! Keeping my fingers crossed we're on our way to some answers. http://www.dysautonomiainternational.org/page.php?ID=178
  21. Is this the 14%? .... "In 13.8% of patients, onset was subacute, and ganglionic acetylcholine receptor antibody was detected in 14.6%, suggesting an autoimmune origin in at least 1 in 7 patients" which I believe is this one ---> AChR Ganglionic Neuronal Ab. http://www.ncbi.nlm.nih.gov/pubmed/17352367 If so, I think Dr. Raj in video from the conference said they aren't finding these in POTS patients anymore.
  22. There was a bit of controversy over this episode because many POTS patients were unhappy with how things were portrayed. If you follow this link and then scroll down the page, you can see the many comments that were posted about the segment. http://katiecouric.com/2014/04/29/health-wellness-a-better-you/
  23. My sensitivities manifest with neuro symptoms too. It's frustrating to be so sensitive that we can't take anything which might bring relief. You could stop taking it and see if those symptoms go away. If they don't, obviously something else is going on. If yes, maybe you could try different brands and see if there is another one you can tolerate?
  24. Yes, mine gets as low as 70/30's at night when I'm in bed lying down. I don't feel any worse because of it though. I guess if it's normal for BP to drop at night and we're already low to begin with, we're going to see these crazy numbers. But like Yogini said, if it's making you feel sick, maybe there are things you can do or see if your Doctor can suggest something.
  25. I also want to say... if you feel unusually bad, new symptoms, things just feel really not right or abnormal for you, maybe call the Doctor. Just to make sure there is nothing really serious going on. With my second child, I went home and had a lot of bleeding that wasn't getting better. It ended up being a complication that needed to be taken care of. I'm sure you're fine, but would just keep the Doctor posted and let him/her make that call.
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