Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About biatecki

  • Rank
    Advanced Member
  1. So I will try again and hope my post makes it onto the boards this time ! I lived with the PH diagnosis for about two years as my respiratory doc couldn`t find another explanation for all my symptoms and abnormal test results .It was a very scary time as its a very nasty diagnosis and I do hope you dont have it . I well remember there was another Dinet Member tentativly diagnosed with PH at the same time .. he was wrongly diagnosed too .There have been others over the years but none ever actually had PH.Its pretty rare. Our plan was to have follow up echos every six months and cardio pulmonary
  2. Just sent you a reply but for some reason it wouldnt show up . I will try again later Margaret
  3. Hello Julie I`m a ten year veteran of Dysautonomia /POTS and haven`t posted in years but read the forum daily . I was wrongly "diagnosed " with PAH during this time as so many of the symptoms are similar and my pulmologist could not find another explanation for my breathing problems..he was not very knowledgable about autonomic dysfunction although he was the Doc( out of many )who first diagnosed me . If you have had echos recently just look for your Pulmonary artery pressure as it is always reported on echos RVSP...Right Ventricular systolic pressure... Any thing over 35 mm HG.should be taken
  4. I`m in Canada so not sure if this information is world wide but my pharmacist called Shire and while it is true that they have stopped producing the 10 mg tablet they are continuing to produce the 2.5 mg and the 5 mg tablet and have no plans to discontinue in the near future. Margaret
  5. Hi Mary Ive just sent you a PM Margaret
  6. Hi Mary! There are several of us here in Canada.. A good way to make contact is to join the Dinet Meet Others Program..you will find fellow sufferers there that perhaps dont post too often..like myself ..but who enjoy having regular contact with each other for support ,information and sometimes just a chat. I live in BC and was diagnosed with dysautonomia in 2002 after 2 years of searching for answers .I finally got my diagnosis after testing in Montreal with Dr Schondorf..who I would strongly recommend. ..there are also a couple of docs in Hamilton who have an autonomic lab and who are suppo
  7. Hi Ernie has given you the info on Autonomic Specialists in Ontario and Quebec..if you are in the west (I`m in BC) just PM me for docs in BC and Alberta.. Best wishes Margaret
  8. Sunfish Thanks for that generous offer ..I know you have so much on your plate but if all other ways dont work ..ie contacting the producers and trying to get a copy ..I would be so very grateful to you if you could send me a copy of Lindas part of the program. In the meantime I`m canvassing all my friends in the hopes someone gets the discovery health channel... Thanks again for the offer .. Margaret
  9. Hi Brenda I do feel for your daughter ..I too had extreme dizziness as one of my POTS symptoms .. .it was 24 /7 and did not at that time seem to be related to low blood pressure, cerebral hypoperfusion or any change in position. I was unable to walk around without hanging onto someone (or the wall) ,couldnt turn my head or even read without extra waves of dizziness and nausea . I was given the usual drugs for dizziness...valium, sert, with no help at all . I was convinced it was Vestibular in origin although testing (EMG) was negative. I persisted and eventually did get a lot of relie
  10. I believe some of our UK friends have some experience with this new drug ..I personally would be very greatful for any info they could provide for us , I have heard that it is very effective for chest pain and has few side effects .... Margaret
  11. I`ve had Dysautonomia since 2000.I do have autonomic nerve damage but over the years my symptoms have improved . However for the last year I have noticed some sensory symptoms ....burning /tingling feet, some loss of sensation to temp ,episodes of numbness /tingling in different parts of limbs .. It seems unlikely to me that this would be related to my dysautonomia coming now after so many years ..I`m not diabetic and at present its just a bit of a puzzle .. It would be interesting to see if many others have sensory problems that they attribute to dysautonomia . Margaret
  12. Linda POTS is a dysautonomia ... but not everyone who is diagnosed with POTS has damage to the autonomic nerves. The fact that you have areas where you dont sweat would indicate that you probably do have some damage to the autonomic nerves. Autonomic dysfunction may be a better phrase to use rather than "failure "as that can cause confusion with PAF. The fact that you have been diagnosed with autonomic dysfunction at Mayo should be sufficient...dont let other docs confuse you . Hope this helps Margaret
  13. My diagnosis is Neuropathic POTS and yes I did test well below normal limits for my gender and body type..Its a good idea to repeat the test..called MIP,MEP`s ...just in case you didnt put full effort into it the first time around .I went on to have EMG testing to rule out things like MG and ALS(yikes ) but nothing sinister was discovered . I guess it IS just part of the dysautonomia . I get daily chest pain and tightness and I sometimes wonder if my weaker respiratory muscles contribute to those symptoms...do you experiencs anything like that ? Margaret.
  14. Hi Angela Cardiopulmonary exs test...I`ve had 5 of them during my 7 years with dysautonomia..I dont think you have to worry about it . Basically you are hooked up to an ECG and a breathing tube to breath in and out of .. you just breathe normally ..your BP will be measured at the start and finish of the test and maybe during too . There is a respiratory doc with you throughout the test and he will stop it at any time if he feels you are struggling . You are correct in that you will be seated on a bike and given progressive resistance. I believe the test lasts for up to 10 mins but I`ve neve
  15. OK so I checked out the Butyeko method ..which I had never heard of.. on a superficial scan it would seem to suggest that shallow breathing with a pause after expiration would increase levels of CO2...as a PT I had already kind of worked that out for myself. However I do find trying to get any sort of voluntary control over my breathing very difficult ..I seem to get mild panic at any attempt....My one and only panic attack happened when I tried some slow deep breathing during an episode of SOB..so I am very wary of trying to alter my breathing pattern . I also note the research done on
  • Create New...