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Everything posted by Achilles2323

  1. my doctor said today i was borderline for Autonomic neuropathy he said it was rite on the border line but he would not worry about it should i really not worry about this ? or am i looking to far into things ?
  2. Can less activity and Weight loss cause muscle atrophy ? I was 180 pounds when I developed pots 8 months ago today I am 160 but I think I have some atrophy in my legs ? Possible ?
  3. I am gonna apologize ahead of time for asking this but I have to see if anyone can tell me what's going on or possibly going on....I have fatigue in my legs after a bowel movement ? I know nasty and weird but I have no clue why? Again sorry
  4. Can you have an autoimmune disease even if every **** test comes back negative ???
  5. This is gonna sound weird but can atenelol "heart medicine" Cause burning pain in the arms and legs ? Is that possible ? Has anyone else had burning pain In there muscles or nerves on atenelol ?
  6. I am having a muscle biopsy this friday August 16th and my Wedding is August 31st....will i heal in time for the wedding ?? i know everyone is different but i was curious how everyone else healed ??
  7. i had a normal skin biopsy normal emg/ncv i have developed this burning pain all day long in my thighs and my biceps for anything i do does anyone else have this type of pain and does it have to do with POTS ? any help would be much appreciated =/
  8. no i am asking my doctor if i can supplement it did the doctors say why you had them ??? or just something caused by POTS ?
  9. good to know because they are driving me crazy and the google did not help either hahaha they wont stop
  10. Anyone know of a Good Ehlos Danlos doctor in Queens NY ? If so please tell me I want to look Into this as the cause of my muscle burning...
  11. how often do yall get these spasms ? are they an everyday thing ? and can they occur anywhere on the body ? has a doctor said anything about them ? maybe i will try to supplement magnesium and calcium ....
  12. they did a paraneoplastic panel from mayo clinic ? they did cpk esr aldolase emg and ncv i am not sure whats going on as it is very painful....i have seen 100 doctors in the passed 8 months and no 1 has any clue whats going on i have probably had every test you can think of honestly
  13. Maybe I will try and supplement that..how do you get checked for als? Anything else help anyone besides magnesium ? Is this a pot symptom ?
  14. Anyone else get muscle spasms or twitches ? Mostly in my.legs feet and arms but they don't hurt I just feel the spasm ? Anyone else ? Is this due to pots ?
  15. I only take atenelol and klonopin But I am in so much pain Something is wrong
  16. my lactic acid is always normal doctors are baffled and have no clue whats going on
  17. Yes it feels as if i am doing a workout all day long but they have checked my lactic acid many many times and its always normal my legs and arms burn all day long for anything i do and the doctors cant figure it out i have had many many many tests 120 doctors in the passed 8 months and no 1 has a clue
  18. Does anyone else have horrible muscle burning ? not weakness just burning ..cpk aldolase esr normal / emg and ncv normal / skin biopsy no neuropathy ....i have this horrible burning all day long in my arms and legs and have no clue why?? anyone else ?
  19. Could pots be idiopathic or is there always a cause to be found ?
  20. what metabolic disease can cause burning muscle ? no muscle weakness just burning in the arms and legs specifically biceps calves and thighs ....doctors thinking of Metabolic but its such a wide spectrum anyone have any clue? keep in mind i have had normal ncv emg and cpk
  21. i was wondering if anyone could help me with Mito. I have POTS / Gilbert's Syndrome / GERD & 1st degree AV Block..A Dr from the mayo clinic said she suspects it could be Mito or metabolic ....i have had an extensive workup outside of those 2 areas from head to toe..they cant find whats causing my POTS...i am having terrible burning pain in my arms and legs all day long and it wont stop...not necessarily weak just very bad muscle burning ....they have just started some simple blood tests for mito and i was wondering if anyone can be some help as if it has any significance or links to mito ? or if anyone can tell me how there bloods compared....i have lost 30 pounds in 7 months and my wedding is next month so me and my family are in desperation mode ...we have been to NYU - Presbyterian and Mount Sinai no 1 can pinpoint whats going on... here are some results i just got back the other day...as i know none of us are doctors i am just asking for opinions or comparisons to other that might lead me in the rite direction Amino Acids Plasma High threonine 226 High Glutamic acid 171 High Proline 455 High 3-Methyl-Histidine 2.1 ------- High Ammonia 43 Blood ------- Low Copper 63 Blood / Always Low Low Vitamin D 26.6 Blood / Always Low Normal Hematology Normal Chemistry Normal Urianalysis Normal Thyroid Normal B12 Normal PET/CT of the brain i am so sorry for the long Post....we are just lost at the moment. If any 1 could provide help or guidance it would be much appreciated. If you need any other blood urine or scans i probably have them and can give the results but these are the ones that might relate 2 Mito.
  22. can anyone explain why my heart rate spikes going uphill ? or upstairs ? i can walk around the house but anything uphill it starts going crazy!!!!!
  23. Has there anyone who has ever been able to play sports full on again ? After POTS ?
  24. are these all part of POTS ? Horrible short term memory cognitive decline memory recall was horrible in my doctors office spatial problems on tests as well ? anyone else deal with these ?
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