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About Lisakay

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  1. Im 48 and just came down with pots My doctor wont run autoimmune tests on me! He says oh it's just pots . See your cardiologist.... Ughh What kind of autoimmune did your friend have? I'm seriously beginning to think I should switch doctors even though I've had this Dr for 15 years
  2. I'm 48 and was just diagnosed w pots 8 mo ago.. I am pretty much house bound 85% and able to do very short walks or trips to small stores on my better days 15% and bed bound 40% of the time I am in the house.. My pots diagnosis immediately followed an esbl urosepsis and 2 surgeries all which took place Aug and Sept 2016. Pots in October 2016 Major short of breathing issues.. Muscle spasms . Weakness.. Headaches High hr Hot and cold tingling sensations Fluctuate BP low normal to normal to high normal.. With Diastolic affected mostly. Tinnitus Weird feeling at base of ribs.. Muscle? Liver? Idk Cannot tolerate certain foods... Makes my symptoms worse. My ast is low my albumin and potassium are right on the low border. Looking back I too can see symptoms that may have been related to this pots diagnosis.. Anxiety attacks and migraines in my 20s.. After surgeries or periods of high emotional stress I would get sob for days, weeks and once for 3.mos..These spells always spontaneously resolved. I also became intolerant of MSG and sulfites and other things in food. I became sob on air pollution days a couple years ago as well I got horrible arthritis in spine, hips and shoulders almost overnight at age 44. I think I may have lived the rest of my life with low level Dysautonomia... Although I cant know for sure . But the stress of 2 surgeries and a bacterial superbug infection threw me overboard I am not happy when breathing is difficult more than half the time Yet x ray and. Ct scan of lungs all Clear and Alpha 1antitrypsin is negative. So here I am hoping to stay on top of the research and hoping to get back to functional.. I am having a hard time finding good docs. And I am not on any meds except Allegra.
  3. Hi.. I know this post is a year old.. But I'm a 48 year old female who was just diagnosed with pots like a week or two ago after having a bad kidney infection and surgery and I have the exact same symptoms.. the shortness of breath ..fatigue.. racing heart... twitching muscles and I'm kind of a geek, so I do a lot of research looking at scientific papers... I do have a degree in medical billing and medical coding so I can understand about half of these scientific research papers LOL and I found an interesting article about mitochondrial cytopathies... it's a disease and it mostly strikes people in childhood but it does strike a lot of adults and it's usually a little less severe when it strikes in adults and it usually flares up at times of stress and a lot of the symptoms people are talking about on this forum like the drooping eyelids, the shortness of breath, fatigue constipation or diarrhea .... just a whole host of General symptoms and I'm not talking about being winded I'm talking about air hunger and a whole host of other symptoms that are actually symptoms that can go with this condition. I'm not sure how to go about getting tested for this I think it's a geneticist that would do this because it's actually like a strand of your DNA or your rdna that's missing at a certain place in your body which would give you whatever symptom you get... but it's interesting and worth looking into it if you feel like it. I think I did read that vitamin B12 can help some people if it was an adult onset and if that's the condition.. also it never hurts to be tested to see if you have vitamin deficiency...
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