Clairefmartin

I have been seraching for 2 days - I found Dr. Afrin's page, but can't find an email. Can someone please PM it to me? I also can;t find the new diagnostic criteria for MCAS, and I checked every site I could find, and even the PubMed literature. If someone has a link, that would be awesome. My allergist/immunologist os open to it and reads what I bring him, so I'd love to bring him more info. Thanks so much!!! Claire

Thank you for the feedback. I will have to check up on the new standards for abnormal tryptase. I am being biopsied for SFN, I wonder if they can check for mast cells while they are at it? And I just got my Lyme tests back - they are negative thank goodness. I think I'm going to push for the AI stuff and the MCAS stuff. They just make the most sense with my history and smyptoms. I live on Zantac, but have not tried an H1 - when I took them in the past they made me VERY tachy and felt horrible. Its been years. I use breath right strips instead I'm a bit scared to try - does anyone have suggestions for non- tachy inducing H1's? I always figured my facial feelings/symotoms were vascular, not MCAS - but my right side of my face randomly swells in reaction to stuff, and my nuero-endo doc said my #2 facial nerve is damaged. I have been lucky to not have any flares in the last few weeks, so I wonder if it is all really just typical allergies? Very confusing. Anyways, thanks all, and I am keeping tabs on this thread because it is so informative!

Wow! What an infromative thread, thank you all for posting! As some of you know, I have pursued the MCAS dx and gave up after 2 tryptase reults of 4.3 and 4.6 and a 24 hour urine histamine of 29 (UG/24) and (16 UG/L). My IgE levels are always elevated. My docs told me no way. I have a feeling though that there is something MCA going on - all my docs are amazed at my extreme dermatographism, I flush when I stand, I get hives, random food and chemical reactions that make my throat swell, sometimes extreme BP or dixxiness reactions to food, and a few others. Massive GERD, I live on Zantac, and it calms my flushing as well. When I had my recent TTT, my face went numb. Hot, sweaty, and numb, it was terrible, and I was red all over. I recently read about exciting new research linking autoimmune disorders and MCAS/Masto, I'll try and find the link. I mention it becaise I have Raynauds, extreme gluten sensistivity, and all the women in my family have AI issues, so we have been doing extensive testing for suspected Sjogrens or AAG, or any other AI disease I may have. I was told I probably have Autonomic Neuropathy, and am being biopsied everywhere for that, SFN, and another rare AI disease (stomach biopsy - forgetting the name). THere is so much cross over in symptoms, I'm very overwhelmed and confused as to what to pursue. I have a gut feeling that I have MCAS, I just am getting burnt out. You guys mentioned the standards had changed - does anyone have a link to the new ones? Do you all think I should keep pushing? I'm going on a year and a half of bed bound yuckiness and collapsing after 2 minutes max, and I really want some answers. I randomly asked my GP for an Epstien Barr test and a Lyme test, and he called the next day because I came back very high (>8) for IgG and EBNA, possibly suggesting its chronic, and he was concerned, so now I have to see ANOTHER doctor - and infectious disease doc. I also go for a GTT test and a Liver U/S because they think I have Metabolic Syndrome. I am keeping my appointmnet at Vandy for teh end of July, I was switched so I see Bagiano (sp?), so thats my last ditch effort to get help. I'm getting burnt out, and space brained - sorry to ramble, but just wanted any input if you feel so inclined And please ignore the type-o's, I'm typing in bed around a baby. Thanks all!!! Claire

I have crazy blood sugar issues - reactive hypoglycemia, and now they are saying insulin resistance, and maybe metabolic syndrome (I go for a GTT and liver U/S next week). The endocrine system and dysautonomia seem to go hand in hand.

MCAS it is I'm just wondering if standing would trigger that, or its some kind of sympathetic overreation. I sweat like crazy, and have a terror panic attack feeling. Weird. Anyways - I'll keep you posted on the magic pill

That is great! On both fronts - with your amazing family dynamic (talk about a great human interest story!) and with the dysautonomia awareness. Feel free to throw in that POTS is usually not caused by deconditioning I keep hearing people tell me that's what their doctors think these days. Anyways - congrats!!!!

It's very confusing, because the antibidy test actually doesn;t show a high percentage of AAG it seems, the symptoms overlap big time with Sjogrens - I guess the Sjogerns lip biopsy is the end all be all of that DX (they are puching for me to do this, but I'm waiting until everything else comes back first before jumping into having a numb lip for a year), and much of teh literature on it (whic isn't much) proposed to rename AAN as AAG. ???? No wonder there is so much disagreement and confusion going on in the reserach world.

So standing could trigger an MCAD or MCAS (which is it these days? ) reaction? I knew exercise could, so I guess that makes sense, as standing is really exercise for me right now! Glad I'm not the only one. Thanks all. I'd really like that magic pill if anyone has it yet

Thanks Naomi - my right side of my face does that too, independant of this. My neuro exam showed something wacky with my facial nerve (number 2 I think?). They weren't sure if it was vascular - I thought it may be MCAD related, but have been told definitively no MCAD (not sure I buy it though). This is a reaction when I stand, it's really weird!!!!

Hello everyone.... I was wondering if anyone experiences their face going numb when they stand. Starts with tingling, and if I push it (like during my horrible TTT yesterday) than it goes completely numb. This happens to me within about 30 seconds of standing, quickly followed by my arms having extreme pins and needles (very painful) and my legs/feet hurting like crazy, but not having that "asleep feeling". Why is this? I looked in the literature, and was a bit confused. Thats how I know my BP is either dropping or about to drop and I need to get flat. Along with massive sweating, feeling lightheaded, vision goes, etc...and the lovely, "Oh no I'm going to die" feeling. I think I have PTSD from all this Still getting tested, waiting on results and follow up, and basically making no progress...but I feel like its coming, I just have to keep pushing for answers. Thanks for all your support. Claire PS - new autonomic specialist thinks i have Autoimmune autonomic neuropathy and neuropathic POTS, maybe OH or NCS. And I'm massively deconditioned, looking into Mayo's adult bootcamp program.

The POTSgrrl blog has lots of info on IVIG - for Sjogren, which seems to have some major overlap with AAG. Here is a blurb with some articles/links from my blog as well: Autoimmune Autonomic Ganglionopathy (AAG) and Autoimmune Autonomic Neuropathy (AAN): "The typical AAG case is a previously healthy young or middle-aged subject, more likely to be a female, presenting with a severe panautonomic failure that evolves within days to 1-2 weeks, similarly to the somatic counterpart Guillain-Barre' syndrome (GBS). The course is generally monophasic with slow, often incomplete recovery. The clinical picture is dominated by orthostatic hypotension, widespread anhidrosis, dry mouth, dry eyes, sexual dysfunction, urinary retention, impaired pupillary responses, reduced heart rate variability and gastrointestinal symptoms ranging from gastroparesis (manifesting as early satiety, postprandial abdominal pain, bloating and vomiting), diarrhea, constipation and in the most severe cases intestinal pseudoobstruction. the term autoimmune autonomic ganglionopathy (AAG) has replaced the more generic term autoimmune autonomic neuropathy (AAN). The autoimmune disorder was suspected in the original description when it was considered as an autonomic variant of Guillain-Barre' syndrome." (15) As in GBS, an antecedent event, such as a viral syndrome, recent immunizations or surgical procedures, is often reported. (15) Mayo Clinic findings report 15-25% of their patients with POTS have AAG. (16) "Milder forms of dysautonomia, such as postural tachycardia syndrome, are associated with ganglionic AChR in 10-15% of cases." (49) Sources: 15.Other Autonomic Neuropathies Associated with Ganglionic Antibody. Paola Sandroni and Phillip A. Low, Auton Neurosci. 2009 March 12; 146(1-2): 13–17. Published online 2008 December 4. 16. The spectrum of autoimmune autonomic neuropathies. Klein C, et al. Ann Neurol. 2003;53:752–758. [PubMed] 49. Invited Article: Autonomic ganglia: target and novel therapeutic tool.Vernino S, Sandroni P, Singer W, Low PA. Neurology. 2008 May 13;70(20):1926-32.

Loved this. Very well written!

Since posting this, the center actually changed their language to not say "cure" on their website (it stated that previously) and I have heard from both people who loved it and others who did not think it was worth the money, but learned a lot. My feeling is that whatever works is great, and to each their own. My big initial issue was the "cure" wording I have also heard that Dr. K works with Dr. Suleman, who is supposed to be great - so kudos to them both for trying to help POTSies. Claire

Thanks Rama, I'll have to look that up.

I had both my kids (now 4 and 7 months) with POTS/Dysautonomia. First went wonderfully, second had me in the hospital 9 months (aka, went BADLY). Still recovering. Feel free to PM me anytime I have a load of journal articles regarding this as well if you'd like them. Claire

Here are some articles to read through with recent findings that I find helpful to take with me to doc appointments: http://stoppotsvirginia.blogspot.com/p/articles-for-er-or-doctor-visit.html

Here are a few if you care to use them: http://stoppotsvirginia.blogspot.com/p/articles-for-er-or-doctor-visit.html

I agree with Katybug, a few beats short ofteh official dx criteria doesn't mean you don't feel the effects. And I'm the same way with the hypoglycemia! I think I feel the crash, even if my blood sugar is too high for official hypoglycemia Mirry, are you on any meds/treatments besides salt? Claire

So sorry this happened!! I know the feeling, and it's terrible. Don't beat yourself up!! (((hugs))) Claire

My blood work came back very strange and my doctor told me it was weird, but gave no thoughts or explanations - so I thought I'd ask you guys. My "resting" (laying on a stretcher with lots of commotion) Dopamine was low, but when I stood up for anout a minute (then started passing out) and they drew blood, it dropped to almost nothing. My NE was low as well. Any thoughts? Anyone else? Thanks! Claire

Thanks all. Issie- I am apparently not hyperPOTS, even though my BP goes up initially if I sit up or stand, then it crashes, and my NE, Cat, Dopamine were low. And my dopamine actually dropped to almost nothing when I stood - that's why they were scratching their heads. I have no clue what that means, have tried to look it up. Anyways, thanks for the imput, I'm getting REALLY impatient waiting on all these tests and results and appointments, i'd really lke to be able to walk (and everything else) again! Claire

(LONG POST ALERT - what's new ) Alright back from doc (neuro-endocrine/dysautonomia kind of doctor). Wow. So apparently my test results are all contradictory, he said I am a paradox I feel so special. All labs (blood) so far normal except they think I have fatty liver disease or a GB issue, which I'm seeing the GI for, and my catecholemine panel did not do what they expected - my dopamine dropped when I stood up and my numbers were the reverse of what they should have been (again - weird). My autonomic function test (CANS) came back very wacky, he said it looks like my sympathetic is lacking, but then overcompensates and goes bonkers. They were a bit hesistant about me seeing Chemali and scoffed a bit at the SFN, said it was usually bilateral, and I only have lab results for my one foot, and the magical Sudoscan (that no one has heard of) came back normal, so he was at a loss as to why my foot is pooling so dramatically, as no peripheral neuopathy showed on the sudoscan, but i have every other sign of neuropathy in my feet and other areas. The problem is, they use weird equipment and base everything on it, and it is geared towards diabetics, not dsyautonomia. So I take it with a grain of salt. They finally are testing my aldosterone/renin/vasopressin stuff to look at diabetes insipidus (or just POTS, as all of us know - low blood volume - DUH), and they want to do a "tapered therapy" approach (which I like). They are setting me up with Physical Medicine Rehabilitation - which apparently is similar to what they do at Mayo/Vandy, they will work to recondition me slowly and correct my orthostatic hypotension and try to do "redistribution of blood volume therapy." He actually mentioned astronauts and deconditioning, and I said you mean Levine's work in TX, and he smiled and said yes, but you don't have a small heart. So that's cool I guess. If that doesn't work, they want me to try Octreotide shots. I have heard about them, but need to read up more. This sounds dumb to me, since it slows your digestion, and I have terrible GI issues. If neither of those work, then they want to try hyperbaric oxygen therapy!!! How weird. So over 4 hours of a visit to be told basically nothing, more testing (uuuhhg), but at least I'm getting (hopefully) some proper reconditioning therapy out of it. Can't wait to meet with Chemali again! Oh and they are so busy because he's such a fancy big shot doctor (he is VERY nice, I actually like him and his staff a lot, it's just annoying), they can't see me for a follow up until the end of August. Anyone done any of these therapies? Hyperbaric chambers? Octreotide? Sounds crazy to me. Thanks.

I love Dr. Rowe, he consulted with my team at Hopkins when I was there, even though I was a pregnant grown woman, and he is a ped doctor. Thanks for posting, I going to share this! Claire

Its called a Daxor Blood Volume Test http://www.daxor.com/indications.asp and I just found out the other day there is one near me in Richmond, VA. The one at CC is a special nuclear test, but the Daxor is supposedly just a accurate and there are more locations that offer it. Hope that helps! Claire

I have heeard great things about both - and they have published a ton of great research Best of luck!