joyagh Posted March 19, 2013 Report Share Posted March 19, 2013 I found a new neurologist who specializes in dysautonomia and he is going to run more tests for peripheral neuropathy, which he thinks I have - autonomic, motor and somatic.the scary part is, CAN (cardiac autonomic neuropathy) has higher rates of morbidity and mortality in people with diabetes, which I don't have. Sudden cardiac death is a risk. I'm on beta blockers so I guess I'm ok.So to all those docs who say POTS can't kill you - it can if untreated.I'm going to try Alpha Lipoic Adic as I've read it regenerates nerve cells and reduces neuropathy symptoms.I was rear-ended 3 times; once by a car going 60 mph. After he hit me, I hit the guardrail and landed and slammed on the brakes so I wouldn't hit the car in front of me. So i had 3 impacts. I had several spinal injuries from that (1996) and have been fighting recurring pinched nerves in my neck and vertebrae going out of joint. I have stage 2 degen in my neck.My POTS sy started after a flu I had at 4 months pregnant so I thought it was a viral onset, but maybe it was just a perfect storm - virus, pregnancy and nerve damage. Quote Link to comment Share on other sites More sharing options...
joyagh Posted March 19, 2013 Author Report Share Posted March 19, 2013 oh, and there's something called the squatting test which helps identify CAN. this explains a lot to me as my initial symptoms were tachy & dypsnea after bending/squatting chores (laundry, litter box etc)http://www.ncbi.nlm.nih.gov/pubmed/22071282 Quote Link to comment Share on other sites More sharing options...
issie Posted March 19, 2013 Report Share Posted March 19, 2013 I've had lots of injuries too - broken back - broken legs/feet/ankles etc. So, know the pain and the degeneration from EDS. Alpha Lipoic is supposed to be one of the best things for neuropathy. (May be a problem if someone is sensitive to sulfates.) Not sure if it would help with degeneration or not. But, supposed to help with the stabbing, numbing pain of neuropathy. I'm trialing LDN right now. The first week has been horrible ---but, it is starting to settle out and get better. It is supposed to help with pain and the immune system. So, may be something you might want to look into.I'm hopeful on this one.Issie Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 19, 2013 Report Share Posted March 19, 2013 How exactly did he diagnose cardiac neuropathy? Mibg? Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 19, 2013 Report Share Posted March 19, 2013 I'm confused - what's the relationship between spine problems and neuropathy (the kind we have SFN)? And if you have autonomic neuropathy, is the heart (CAN) likely involved too? Quote Link to comment Share on other sites More sharing options...
issie Posted March 19, 2013 Report Share Posted March 19, 2013 I'm confused - what's the relationship between spine problems and neuropathy (the kind we have SFN)? And if you have autonomic neuropathy, is the heart (CAN) likely involved too? With neuropathy there is a lot of pain. Alpha Lipoic is supposed to help heal the nerves themselves. With spinal injuries - there are also injuries to the nerves. I don't think there are any studies showing that it will help with injuries like that ---but, who knows. For me, I think a lot of my back pains are AS related and therefore autoimmune --that's where the LDN comes in and it is also supposed to help with healing of the nerves. Issie Quote Link to comment Share on other sites More sharing options...
joyagh Posted March 19, 2013 Author Report Share Posted March 19, 2013 Well, since all the nerves in the body come through the spine (or brain), any spinal damage or head trauma can cause nerve damage. all the organs are part of the autonomic nervous system so if there is damage to the nerves that innervate the heart (nerves that come from T4-8 and the vagus nerve), it can affect the function of the heart/lungs.google-image "autonomic nerve diagram". it will show you which nerves affect which organs and where they come from in the spine. Quote Link to comment Share on other sites More sharing options...
joyagh Posted March 19, 2013 Author Report Share Posted March 19, 2013 I'm confused - what's the relationship between spine problems and neuropathy (the kind we have SFN)? And if you have autonomic neuropathy, is the heart (CAN) likely involved too?With neuropathy there is a lot of pain. Alpha Lipoic is supposed to help heal the nerves themselves. With spinal injuries - there are also injuries to the nerves. I don't think there are any studies showing that it will help with injuries like that ---but, who knows. For me, I think a lot of my back pains are AS related and therefore autoimmune --that's where the LDN comes in and it is also supposed to help with healing of the nerves.Issienerve pain is called neuralgia. neuropathy is nerve damage causing lack of function, with or without pain.Alpha Lipoic Acid has been found to help regrow damaged nerves, healing neuropathy and also reducing neuralgia symptoms.most studies are related to diabetic peripheral neuropathy, but PN has many causes - spinal injury being one of them.Peripheral nervous system includes sensory, motor and autonomic nerves that run outside the brain and spinal column (but originate in the spine) including organs and limbs. Nerves that do not exit the spinal column or brain is the central nervous system.My doc has not officially dx'd PN yet, but suspects it. I have more tests in 2 weeks. They're going to do muscle/nerve testing and an eye tracking test. The squatting test is a good one for me too b/c I get really symptomatic doing that, and it indicates CAN."1.) Short-term treatment for 3 weeks using 600 mg of thioctic acid (Alpha Lipoic Acid) i.v. per day appears to reduce the chief symptoms of diabetic polyneuropathy. A 3-week pilot study of 1800 mg per day given orally indicates that the therapeutic effect may be independent of the route of administration, but this needs to be confirmed in a larger sample size. 2.) The effect on symptoms is accompanied by an improvement of neuropathic deficits. 3.) Oral treatment for 4-7 months tends to reduce neuropathic deficits and improves cardiac autonomic neuropathy. 4.) Preliminary data over 2 years indicate possible long-term improvement in motor and sensory nerve conduction in the lower limbs. 5.) Clinical and postmarketing surveillance studies have revealed a highly favourable safety profile of the drug. Based on these findings, a pivotal long-term multicenter trial of oral treatment with thioctic acid (NATHAN I Study) is being conducted in North America and Europe aimed at slowing the progression of diabetic polyneuropathy using a clinically meaningful and reliable primary outcome measure that combines clinical and neurophysiological assessment."http://www.ncbi.nlm.nih.gov/pubmed/10595592 Quote Link to comment Share on other sites More sharing options...
joyagh Posted March 19, 2013 Author Report Share Posted March 19, 2013 the tests I'm going to have are VNG, EMG and NCV. I don't know what those stand for. Quote Link to comment Share on other sites More sharing options...
issie Posted March 19, 2013 Report Share Posted March 19, 2013 Let us know what you learn. I think I'll go get my alpha lipoic out and see if I can tolerate it - since I've been trying to get my sulphur pathways to work better --maybe I can now. It is really high in sulphur. (People with sulphate issues --may not be able to use this.) Issie Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted March 19, 2013 Report Share Posted March 19, 2013 OK, my brain is struggling. I think an injury to a nerve coming directly off the spine, like if a herniated disc was pressing on a nerve or something might show up on EMG, whereas the more widespread small fiber neuropathy or autonomic neuropathy would have to be diagnosed other ways - skin biopsy, QSART, Valsalva. I'm going to ask my POTS Dr. about CAN next time I see him. Please let us know what you learn, Joy. Quote Link to comment Share on other sites More sharing options...
joyagh Posted March 19, 2013 Author Report Share Posted March 19, 2013 I'm not familiar with the EMG or QSART. The valsalva test I had was not a pure test I don't think. they had me blow through a tube that was open on the other end to see how long and with what pressure I could blow. It was more of a pulmonary test IMO. I had that same thing done with my Pulmonary testing. I thought Valsalva had to have a closed end, so you react to the pressure. I know if I hold my breath (hiccups) I get immediately dizzy and tachy and dypsnea.I will update after my new tests are done. Quote Link to comment Share on other sites More sharing options...
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