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Everything posted by BEE

  1. for me its tingling..burning ..sensastion of foot falling asleep..
  2. ERNIE...have thought about you time to time and wondered how things were going... Hope they are doing ok
  3. ACYLcarnitine levels,acids,organci acids,COQ-10 wer all very low with me..or significantly reduced. That is what he based alot of it. I have NO know cause of dysutonomia..wsa completely healthy growing up, and let me tell you within WEEKS..i have gone from functioning decently with POTS to becoming quite incapacitated for my own standards. I described how I can use my muscles yet it feels as if no energy is there. I have peripheral neuropathy over 65% of my body..not just autonomic wise. TINGLING IN nose head,lips feet,hand etc. I also have a TTT that shows that I am not responding as I once was. I still jump 30 beats but my baseline is lower and my BP is almost normal always. This was a few days ago. Dr. Cohen is the DR. that saw me. I take naps and am WORSE off thatn before I took the naps. It is all very trying..and I have spoken with UMDF trying to figure out where I am at and why I have progressed so quickly. IT IS LIKE WALKING AROUND WITH SEVEREST form of mono..continually with no change day to day. There is no respite. And believe me I have two young boys that need cared for. And I am Type A personality person. He based it on many things and first off is looking for other deficiencies. Thank you for explaining Rachel.
  4. Based on my enzymes reports..some other factors involved..physical limiations to this point. I have some bloodwork being sent probrbaly very similar to Rachel. A dr. I was seeing ebfore this specialist did the minimal bloodwork to see if it was a possiblity. ANd it was ..I have had the supplements for months. Just wasn't sure if he was 100%. I will have to get records to let you know what EXACTLY...he based it on adn some other bloodwork such as lactic acid?. I believe carnitine and COQ-10 levels were diminished if I am not mistaken.As for symptoms..I was functioning halfway decent with my POTS the last few years. And about in Aug. I had MAJOR change. FATIGUE as if in on verge of collapse EVERYDAY non relenting. and some other major symptoms. I have been progressive. lets put it that way. B
  5. Well I saw a mitochondrial dr. at Cleveland CLinic and based on bloodwork and findings I am told that I DO have mitochondrial disease..going along with my autonomic dysfunction. I had numerous bloodwork sent to GA. and will know which type and prognosis and such in a few weeks. He was a wonderful dr. It is alot to handle as there are a few on this board that also have it. I believe. WOW.. Belinda
  6. Well..first of all I havent been on in a while..mostly cause I ..like someone else had posted am trying to not focus so much on my illness in hopes that it makes me feel better. Not really the case. I have been a member here and kinda quiet that last few months. So hello to all you newbies.. I have been dealing with SEVERE fatigue since about late aug. and have not recovered from it. Kinda feels like I could collapse any moment and even laying in bed and after a nap I am fatigued. Arms and body just feel like the electrical impluses arent getting to them even though i can move them.ANd my head constantly feels full. when i first got pots i was able to live a halfway normal life..could at least do things some days. I have some drs. opinions on what is going on...nothing concrete. From CFS to Mitochondrial disease. I have withdrawn from all meds none seem to help. Even IV's really don't do much. ALl regular bloodowrk comes back normal and all EMG's imagine that? I am being seen at the Cleveland clinic with a well known cardio. and the following day will be seeing a mitochondrial specialist there. So keep me in your thoughts. As I have 2 children that need their mommy to get some answers. I have been doing this on my own. And it has become very trying and I'm trying to keep my spirits up. Just very hard at this time..and I really cannot go somewhere to talk to any one about it. I am participating in a prgram at university hospitals in cleveland also..they have just started in their autonomic division. I have also been contacted by vanderbilt to participate in a few studies they have going on..I know they won't have the magic bullet but maybe it can be narrowed down. and what may help. Nice to meet all you new people~and miss all of the ones I haven't chatted with in a while. ~Belinda
  7. Rachel I am glad that they are getting to the bottom of some things for you:). I am thinking of you as your test results return. ~bee
  9. i can relate totally..have more symptoms with fatigue feelings..as I started out with more pOTS symptoms.
  10. YOUR IN MY THOUGHTS AMY... Belinda
  11. aww morgan what a load of cr**!!!I certainly hope for your sons and your sake that this stuff owrks out...but what a pain in the hiney...for you to have to go through all that again.. ~B
  12. melissa glad they are trying different routes to find the source..I HOPE things all go smoothly for the procedures. HUGS~Belinda
  13. Melissa I m glad to hear about the valves being clean...TG..~ As for the holding...time..I am thinking of you as everyone else... Hope they are giving you some sleep as much as the hospitals can...we all know how that goes. HUGS~B
  14. I was ablated for IST~and SVT~ had an AVNRT. I was fine for a few years then took a MAJOR plunge...I have been told to have never had the ablation but geesh 9 yrs. ago ..POTS didn't exist in my life..just some TACH. So who knew... I think there may be some info out there on it. But I believe it was a specialist that told me it may have made things worsen. WHo knows...
  15. DIZZ~ YOu know I am thinking of you~ Can' really tell you to hang in there cause thats all we really do sometimes...Just know I am here if you need me~Love ya my potsy friend.. Bumblina~
  17. glad to see you back and posting about whats going on with you...your right may the new year bring less upon you in terms of health.. Hugs~B
  18. I have posted about this...I hjave had this recoccuring problem for almost two years..it is very bothersome and sorry you are experiencing it...there have been no solid answers on why or what causes it... I constantly feel pressure behind my nose and above it etc...sometimes a pulling sensation and it used to burn..alot. Hope somebody can find out what causes this...
  19. I have had one..I still do...message me if you would like to find out more about it...
  20. This will beinterest ing to see what the find out...I am excited for you Maxaroo...
  21. I love this question..I have often considered it...lol. I can do the little balance elbows on legs forget what we used to call it..standing on head sounds like a plan..
  22. Thank you all for your replies and story sharing...not that I wish this on anyone.but to know some have comparable fatigue kinda helps me be a little relieved in the "this scares me" dept. I have been calm with it not running to the ER or docs ALL the time. I did however go to my doc yesterday followup..and he thought hmm...I never did a mono test"? DUH...I told him how I felt months ago. SO we will be doing one. He would like to try me on Synthroid..even though my thyroid levels are mostly normal. For energy..he feels it is the safest way. My mom of all people said he should check me for TB.(odd) I know Sophia you have tried this..anyone else? I am a little reluctant due to arrythmia history. BUt i am desperate for energy..at least for the holidays. I tried the B-vitamins complex they themselves gave me palps. Why cant things ever be easier on us I will never know...not like we have enough with the cardiac aspect and staying upright. SO at least he listened I return in 2 wks. Not sure about the synthroid..it was the lowest dose I believe. .25mg B
  23. I have been Severely fatigued for about 3 1/2 mths. now I am frustrated. I can barely do daily self care activites on certain days..on those days I either push or dont do them at all. This is the kind of fatigue I used to get right before my periods when first diagnosed with autonomic probs. I have had a fw tests to check of course for the normal things they think of : thyroid EMG sugar(which has been off sometimes) anemia Nothing..answers it. I am not depressed by any means in fact since my POTS diagnoses I had been doing fairly well. I cannot tolerate caffeine due to cardiac history. I dont know what doc to turned to "to look outside the box" mitochondrial disease was suggested yet I dont meet alot of what its description is. plus medicare doesnt pay for its bloodwork.boo on them I am just SO flippin fatigued all the time..not normal fatigue either like the kind you feel as though you could collapse at any moment and of course I don't. I notice when I lay back down I kind of get dizzy for a minute other than that. It is really starting to freak me out ok ..I admit it has been for a while now. Ideas..suggestiions..?? Thanks for listening..hate to complain just aggravated. Bee
  24. what a load of C*** sorry to hear about this Morgan...hmmm that is just lovely.
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