biatecki

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 testing every year. After 4 echos and no pulmonary artery pressure above 30 mmhg the doc began to doubt his diagnosis and sent me to an Intervential Cardiologist for a right heart cath to find out for sure . She was reluctant to do it and so was I as I had already had a left angiogram and was in no hurry to have another . My respiratory doc wasn`t very happy with us and wanted to go ahead and do the RHC himself but I declined his offer!!(as if I would let a respiratory doc do a cardiology proceedure!!!! ) Also by then I had had full autonomic testing and had a firm diagnosis of Neuropathic Pots /Pandysautonomia.I felt in my heart that the autonomic dysfunction WAS responsible for all my weird symptoms ..and nothing has happened over the last several years to change my mind . Would it be possible for you to have another echo ..this time making sure they concentrate on getting a pulmonary artery pressure ..? I would want to have some more evidence before having something as invasive as a RHC. BTW I have always had good O2 sats at rest, on exs and sleeping. The fact that your O2 sats drop into the eighties on exs is of REAL concern . Hope this helps ... I `m happy to help further if I can Cheers Margaret .

Just sent you a reply but for some reason it wouldnt show up . I will try again later Margaret

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 seriously. I do feel anyone experiencing a drop in O2 sats under 90 on exs should take this very seriously too . Surely if the reynauds was responsible you you show low O2 sats during rest as well ? Hope this helps Margaret

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

Hi Mary Ive just sent you a PM Margaret

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 supposed to be very good . There is also a doc in Calgary ..an EP with a strong interest in syncope .. I`m fortunate at present to have two very knowledgeable ANS docs in Vancouver..although one is just about to retire. Please contact me if you would like more detailed information and I would be happy to hear from you anytime! Cheers, Margaret.

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

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

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 relief from Vestibular Rehab. This is done by specially trained PTs. It takes several weeks and works better if you avoid the "dizzy meds " I am sure your daughters PT will be able to refer you to someone. Seven years later I still experience dizziness on a daily basis but it is much milder and more related to cerebral hypoperfusion than vestibular dizziness . There is a difference . I have taken Florinef for about 2 years now with no problems ..in fact that and Midodrine really help my present "dizzyness " Hope this helps , Margaret

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

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

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

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.

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 never lasted more than 2 or 3... Hope this helps Margaret

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 this method does not seem to indicate an increase in CO2 levels in those taking part in the study .. OLL.. do you have any personal experience with this method? Any success with it anyone ? Margaret

Hi This is something that I have been trying to get an explanation for ...dizziness that cant be explained away by hypotension... If you look up some of the research ,esp that coming out of Mayo, hypocapnea (low CO2) would seem to be the answer ...It would explain the tingling and numbness you experience . So far Ive not been able to find out how you correct this...going around breathing into a brown bag seems a little silly.... Hope this helps , Margaret

Tearose, Yes , like all nerves, autonomic nerves can regenerate ... it just takes a long time . My sweat test ,about 4 years ago. showed sweating only on my face and front of my chest ..now I notice my arms and legs sweat a little and my autonomic doc confirms that regeneration is going on ! Hope this answers your question. Margaret

Rachel, If you are sitting in a wheelchair for more than just 20 mins or so then its essencial that you have a cushion.I cannot understand any medical company selling a wheelchair without advising on a cushion. I also know that most companies will not rent out cushions..for very obvious hygene reasons. There is no need to go to the expense of a roho ,or gel cushion, unless you spend most of the day in a wheelchair or have pressure /skin breakdown issues. Look for one of the lower end cushions such as a Geo Matt, or BFO ,,you can also get hard plastic inserts to put between the sagging seat sling and the cushion to give a more supportive base . Hope this helps Margaret.

CONGRATULATIONS PERSEPHONE , YOU ARE AWESOME!! to quote Simon and Garfuncle, "Sail on Silver girl, Sail on by Your time has come to shine All your dreams are on their way...." Margaret.

Persephone, Just posted them ... give them about 10 days to cross the pond... Cheers , Margaret.

Persephone, I have 5 of the old pamphlets left .. I could easily pop them in an envelope and send them off to you ..just pm me your mail address in oxford. Margaret

I believe Mayo Clinic was originally designed to be the place to go for those with rare and unusual illness. Maybe their role has changed over the years? Anyhow I just wanted to add my thanks for all your efforts,Emily put it so well. Next time give me a call, I`ll go with you,I`m just over the border in BC! Margaret

I dont think you will have any problems with fillings especially if you make them aware that epi is probably not for you . However I have learned the hard way that having a tooth out can be more of a problem for us with autonomic problems. I had a bothersome tooth pulled out 6 weeks ago and have had a dry socket and infections(2 antibiotics) and it is still not healed .... still have an open wound with dressings in it in my mouth making eating and drinking a chore...and you know how much we all need to drink! My dentist was very puzzled as to why but my autonomic doc was not at all surprised..he said I will take twice as long to heal as anyone else and that getting infection is due to my disordered saliva production. Never again will I have a tooth out! Hope your experience is not like mine! Margaret.

I would suggest that you take it with meals as it is hard on the tummy otherwise .I was already on Midodrine and just added the mestinon...starting with 30 mg every 6 hours and increasing to 60 mg. Unfortunately it didnt help... Margaret

Consider trying vestibular rehab..It really helped me and is a much better option than medication which actually slows down your ability to recover .. Margaret