HopeSprings

Yup, a cold makes my POTS worse. Dumb ANS over reacts to everything. I like Jackie's scientific explanation

Sue - yesterday when I looked up autonomic neuropathy/insulin (was putting in all kinds of word combos in google) I came across what you're referring to "hypoglycemia unawareness" which could be a result of autonomic nerve damage/dysfunction. The fact that you don't sweat (I don't either according to QSART) I would think has to mean autonomic nerve damage or dysfunction. This must be why you feel so HOT. Is it possible the hypoglycemia and lack of sweating are all caused by the same driving force, something is damaging the autonomic nerves (not diabetes in your case) and this is the result. I also had the hypoglycemia before "POTS" (I'll define as noticable tachycardia) - about 5 years before, along with a bunch of other symptoms. I wonder if the "POTS" could be a progression of whatever was wrong to begin with. I'm just thinking out loud, this could all be wrong. I still think you're right to fully investigate the glucose issue and do a thorough search with your Endo and I'm still going to bring it up with mine. http://www.ncbi.nlm.nih.gov/pubmed/7065562 MECHANISMS OF HYPOGLYCEMIA UNAWARENESS IN IDDM— Accepting the premise that normal awareness of developing hypoglycemia is based on the perception of neurogenic warning symptoms (28), as discussed earlier, hypoglycemia unawareness in IDDM could theoretically be the result of a reduced autonomic response, a reduced end-organ sensitivity to a normal autonomic response, or both. From --> http://care.diabetesjournals.org/content/16/Supplement_3/40.full.pdf

I was trying to find info since yesterday linking ANS and insulin... maybe it is just part of our dysautonomia. Would love to hear any thoughts on this. But I would still want to make sure it's not something else that's fixable before chalking it up to dysautonomia. http://www.ncbi.nlm.nih.gov/pubmed/10819232 http://courses.washington.edu/conj/bess/neuralreg/neuralreg.html

Chaos - really?? Those numbers are really low and I would think should prompt an investigation? I would just want to at least try to rule other stuff out because what if it was something weird and rare, but fixable? Now I'm thinking my 53 isn't very low compared to you guys with numbers in the 30's and 40's! Maybe you should check with another endocrinologist? Unless you trust this person and feel comfortable with the explanation I guess.

Ok that sounds really complicated or at the very least, a pain in the ____. Insurance always makes things so difficult. I'm really happy to hear you finalllllly found someone who gets it though! Hope you can capture the info you need to get that other test done. Let us know what happens. Katie, sounds like you have a good doctor there!

You are so right. We're still the same person inside even if we can't do all the things we want. Thank you for that reminder!

I love this and wish I could embrace it. I actually feel taken over by this illness. I can't do most of the things that defined who I was so now I'm just this sick person and don't feel like much else. My sole purpose in life (with the exception of being a good mother to my children) has been to find out what is wrong with me and get it fixed. I get unsolicited advice too, Racer about things I "could be doing" to make myself better. I'm pretty sure if there were easy answers we would have found them by now. So annoying. And to answer the original question, I agree with what most of you said that maybe from afar I look okay, but if you look closely there are definite signs of poor health.

Yeah 41 seems awfully low. Oh my God, a 72 hour fast? I think I would die, lol. I cannot believe they only did finger sticks. I don't know much about this topic and that even sounds wrong to me! Ugh, you could have had all that valuable info. Oh well, it's too late now and you have a good Doctor who will hopefully know what to do. Does he/she give an opinion about what may be underlying this or where to go from here?

This was a neuro looking for the underlying cause of my SFN, diabetes in this case. She told me everything was normal, but then I questioned her on the low glucose and her response was it's not that low and I just make a little too much insulin, but I can follow up with an endocrinologist if I want. I had a 4 hour GTT when I first got sick and it showed this flat response, not super low, but lowish numbers and didn't rise appropriately either. The Doctor said I had hypoglycemia and to adjust my diet. My current PCP has caught some low readings and said I have reactive hypoglycemia, so I guess yes, it's been an issue for a while. Eating makes me super spacey, especially high carb things like bagels, but I haven't been able to capture low readings at home with the little monitor.... so I don't know. I'm seeing an Endo next week to follow up on some thyroid nodules and will ask her about this then, but I think she'll probably just blow it off and say it's nothing. Glad you found someone good to work with you, Sue. Good endos are so hard to find.

Hello smart people. The Doctor sent me for a 2 hour glucose tolerance test looking for diabetes and the results came back with low blood glucose for hours 1 and 2. The results are: fasting, 80, 1/2 hour - 98, hour 1 - 56, hour 2 - 53. My primary care Doctor found random low readings in the 60's in the past and diagnosed reactive hypoglycemia, but I wonder if these new results point to anything else I can look for. I wish the Doctor who ordered this listened to me when I asked her to include insulin levels during the GTT, but she didn't understand why (and I couldn't explain it, all I remembered was people here saying make sure to get insulin levels too, but I forgot why!) - anyway she said no. Any thoughts?

!!!! How can this STILL happen even with a diagnosis! I'm totally confused - what's up with the Doctor who ordered the scan and found your floating kidneys? I'm glad you stood up for yourself.

Maia - just noticed in your update you wrote the floating kidneys were causing (all the stuff you listed) plus SFN. How can this be causing small fiber neuropathy? Regarding your weekend symptoms - WHY is your Doctor treating you this way if they have identified the root cause of your problems?

Dave- I considered the patchy explanation, but the latest neuro thought it didn't make sense because the samples were taken within inches of eachother. That first biopsy was reviewed by two other pathologists and they both agreed it was positive. Simply can't explain what happened with the other two. No, the burning has gotten worse over time, spreading to other body parts. I'm sure I have neuropathy, but is it causing the POTS, I dunno. I just like things to make sense, consistency - so I can be sure I'm heading down the right path. I agree with your method of going down the list one by one and eliminating possibilites. This has been my approach too. This conversation got me thinking last night and I looked into the Sodium channel Na genetic thing and there is testing available. Did you know about that? They say this may explain 30% of idiopathic SFN cases. I'm going to ask my neuro about it. http://www.genedx.com/test-catalog/disorders/small-fiber-neuropathy-sfn/

Dave - I don't know for sure that SFN is causing my POTS and neither do the Doctors who report that my "POTS may be related to a small fiber neuropathy." I'm not even 100% sure about the SFN diagnosis, although I believe I do have it. My first biopsy showed SFN, but the next two did NOT show it and believe me, I did not get better in between biopsies. The I had a QSART which showed as very positive. So do I have SFN? Your guess is as good as mine and the Doctors cannot explain why the different biopsy/QSART results. They can't give me one logical explanation. I certainly have symptoms of sensory neuropathy, but is my POTS caused by autonomic neuropathy? I don't know. I have been tested for everything under the sun that could cause SFN and I am always negative. At this point we are re-testing everything under the sun that could cause SFN. I started with burning feet (I believe sensory neuropathy) and other neuro symptoms in 1997, but the crazy heart stuff (which started quite abruptly and dramatically) didn't begin until 2006. So did the neuropathy worsen overnight (sending me to the ER) or did something new happen? It's complicated and I'm open to all possibilities and willing to explore anything that can cause POTS. I think in my case it's possible I have one, two or even more things going on at once. I think Nutcracker is a longshot, but since there is evidence of compression, I think it's worth looking into. Obviously it hasn't been high priority because I had that renal ultrasound a year ago and still haven't done anything with it, but it's something in the back of my mind I may pursue when I've run out of other ideas. Issie - I don't doubt it. I think true NCS actually causing disabling symptoms is rare and a longshot, but it's on the backburner you know?

Yeah I catch myself holding my breath too Kim.

I've been down the Nutcracker road (ok, that would sound really odd to anyone NOT in our world ) The first possible clue was an abdominal CT where they said there was some narrowing of the renal vein, but not enough to be considered NS. Then I saw a vascular surgeon and requested a renal ultrasound supine, sitting and standing - this showed the vein does get quite compressed in the sitting and standing positions. Problem was (as always) the Doctor had no idea what to do with this information. He didn't know if this was normal or not. I have the CD and will eventually take it somewhere once I can find a Doctor who might have a clue.

40, been sick since my mid 20's

Had similar experience with Dr. Tullo and have heard the same from other patients. I see Dr. Weimer at Columbia and like him.

Yes exactly. I never had to think about swallowing before - I just did it!

Yes, this has been happening to me for the past year. Doing ok with liquids, but having a hard time with solid food, especially things thick and chewy like bagels or meat. It oddly seems to come and go where it will be a problem for several days and then be okay or I'll be okay the first few bites and then start having trouble. Feels like something is disrupting the swallowing mechanism and it gets scary like you're going to choke. I'm not sure how to manage this. I try to take small bites, chew really well and then swallow with water. Sometimes though I give up halfway through because I feel like I just can't do it and I'm full enough so I don't eat the rest. I have no idea what's causing this.

Good luck, Alex! Keeping my fingers crossed for you.

Thank you for the information.

Thanks Science Girl - I've been trying to get this question answered for a long time. Your explanation makes sense. In what form do you take the progesterone?

I usually start feeling better about 10-12 days before menstruation, less dizzy and then right before or day of - start to go really downhill. (I'm there now in fact.) And then it's bad until I get to that 10-12 day time period before and so on. It's quite an obvious and dramatic shift. Does the timing fit into your explanation above Science girl? I'm not doing well and can't read all of this thread.

Too bad I've tested negative for each and every one of those things. How can someone have sero-negative AAG - how would they differentiate between someone who has it, but doesn't show antibodies and someone who really doesn't have it?