New And Looking For Support

[Auntwinnie]

Hi-I am new-I don't have a diagnosis but I am very curious about this and anxious for my next Drs appointment to ask to be tested for this. I don't even know where to start. As a teen I was diagnosed with Raynauds. About 12 yrs ago I started having multiple "spots" (talangilatasias) and in the last 6 years many other symtoms such as Esphogical dismotility, extreme fatigue, shortness of breath, very dry in some areas,feeling of weakness, muscle aches, bowel issues and dizziness. So at this point I am diagnosied with limited Scleroderma, Mild Pulmonary hypertension, severe Raynauds, mild sleep apnea. For the last few years I have been constantly telling my drs that I have EXTREME fagtigue-the kind of fatigue that makes me just have to lie down, shortness of breath and the scariest is dizziness on exertion-I get very dizzy, tunnel vision, my hearing gets distant. I have not passed out but I have come very close-slid down walls with my back or hold on to things bent over until I feel better. The Drs say that My pulmonary hypertension is too mild to be causing these symptoms. I have a Rhumatologist, cardiologist, pulmonist, Gastro, OB/GYN and I just saw a neuro. I have a multitude of tests and every doctor comes back saying they don't know what is causing it-mostly I've been told to loose weight and get more exercise ( I am overweight but not drasticlly) The last Dr I saw was the neuro who was very kind and compassionate and said she felt really bad because I keep hearing this-but my EMG showed my muscles were fine and she could find no reason for my weakness and dizziness. She suggested I go back to the cardiologist to get the Pulmonary Hypertension re looked at. Just after I saw her someone mentioned POTS on my scleroderma forum so I looked it up just to see what it was. As I read the symptoms I actually started crying-I sent the link to my husband at work and he was shocked. I fit almost all the symptoms. Everything I have been telling Drs for years now that are symptoms were in the list of POTS I have tried checking my heart rate which I know is unofficial but the first time I went from lying down at 98 to up to 134 after 10 min of standing. I have checked it since and it wasn't as drastic- 86 up to about 98 or 95 up to 120. I know I need to see a specialist in this and it may even not be this but after so many years of feeling so horrible and made almost to feel like I'm crazy it is nice to have a possible "real" reason for it. I live in Southwestern Ontario if anyone has suggestion of where is the best place to go for testing.

thanks for listening and sorry this is so long

[Kellysavedbygrace]

So glad you found this forum. Welcome!

It sounds likely that you do have POTS but as you pointed out you need to get a doctor to diagnose it. Unfortunately most doctors are not familiar with it and you are not alone- most everyone here on this forum was originally told they had something else- anxiety, fibromyalgia, etc. Before discovering Dysautonomia. Sounds

Ike you are headed in the right direction. I'm not sure what to say about who to see near Ontario but if you are willing to drive a bit, get on an appointment many months in the future and go to the states you could get a workup by Dr. Fred Jaeger at the Cleveland Clinic in Cleveland OH or Dr. Blair Grubb in Toledo OH. (Check the listings of doctors on this website- those are just two I know of that are closer to you. I highly recommend both.)

As you may know the diagnostic criteria for POTS is a 30 bpm increase upon standing - best diagnosed using a Tilit Table Test (the gold standard) but it has been documented in research out of Vanderbilt that the poor man's "stand test" is nearly as effective. That said, there is also evidence of variation re: the time of day in which you do this Orthostatic test. Typically the rise won't be as marked later in the day so it is recommended that the test be done as early in the morning as possible. I'd say if you have three mornings in a row where you have a 30 bpm documented increase or more you have enough evidence along with the information provided on this site to take to any doctor.

Another thought is to find a younger doctor who has recently been trained at a major medical center. Most will have at least heard of Dysautonomia. I have found a local research doctor who knew nothing about POTS but was willing to take my case on. I brought the info about POTS to him and asked him if he thought I had it- he said he didn't know but would research it. He came back the next morn and said, "yes, I think you have POTS.".

It is likely that if you want good medical help for Dysautonomia you will need to travel. I have travelled lots to see doctors and it has really helped. I know some cannot afford to do that but if you can I would encourage it. I regularly travel to Charleston SC and Pensacola FL to see my two doctors. One specializes in Dysautonomia, the other specializes in Systemic Mast Cell Disease. Both are more than 8 HR drives from my house. I'm thankful to have a local doc who is willing to work with them and others.

You'll also find a wealth of help and information here on this forum. I have found more helpful information here than on any other site. I hope this finds you having a good moment. Blessings, Kelly

[Katybug]

Welcome! Sorry to hear you struggles getting diagnosed. Many of us have gone through that but it sounds like tracking down a doc that is familiar with autonomic dysfunction is a good track for you.

[cupcakemomma5]

Hi there,

I am in Ottawa. Not a lot of help over this way.....lol. Actually, I have a great group of doctors here and I am currently awaiting my referral to Hamilton.

I would ask your docs, if they could refer you to Dr.Morillo or Dr.Guzman at McMaster University.

You can check on the main Page for doctor list and they will be there.

I have heard nothing but great reviews on them.

Message me if ever you need to chat.

As I was once told by a crappy doctor I am new as well to all this crazy, so enjoy the ride

Take Care

Tara

[blueskies]

Hi Auntwinnie,

Glad you found this forum. There's a wealth of info here. I'm in Australia and although we do have a few pots specialists now (in areas I can't manage to travel to) I was not diagnosed by one. My allergist, a renowned doc at one of our best hospitals, who had been treating me for two years thought there was 'something else wrong' with me and sent me off to see this highly thought of vascular diagnostician. (BTW, I was also seeing a neurologist at the time who was unsuccessfully treating my almost daily migraine). The vascular doc recognized I had a form of dys at my first appointment but did not tell me as he wanted to run tests etc. I found out later he suspected this -- he wrote it to the doc that reffered me to him and I got a copy of that first letter from him. At my second appointment a month later, after all tests had been done, he told me I had Postural Tachycardia Syndrome. At the time I was sitting in a chair opposite his desk with my head resting on his desk- not something I'd usually do but I was physically just about finished. The effort of getting to the appointment had been huge. I remember raising my head and saying 'Can you write that down for me, I'll never remember it.' He did so -- wrote it in full and also the acronym POTS. I was incredibly relieved to get the diagnosis. I'd never heard of such a condition and not being a medical person in anyway I didn't even know we had an ANS. I was so relieved because for years I had been treated like a hypochondriac by so many doctors and friends and family and had come to believe I might be one.

That's a nasty label and I feel for anyone that has a hypochondriasis or any other form of somatoform disorder.I feel for us dys/potsies too.

blue

[Auntwinnie]

Thank you so much for your replies. I have no problem travelling for drs if that is what it takes. I will have to look into what kind of coverage I would have- if any - to see any drs in the states.

I have heard about the dr in Hamilton being good - cupcakemama I do want to hear how you make out there- that is where I want to ask for my referral from

[HyperPOTS8]

Hi Auntwinnie,

You might want to ask to be tested for antiphospholipid syndrome(APS), Also called Hughes syndrome. It can cause Raynauds and pulmonary hypertension--and although this is not well known it can also cause autonomic dysfunction. I have pots due to APS and have improved significantly with the proper therapy for APS. The tests are PT, aPTT, anticardiolipin IgG and IgM, beta 2 glycoprotein IgG and IgM and the lupus anticoagulant. You can read a bit more about this if you like on the forum Healthunlocked Hughes syndrome.

Edited April 16, 2013 by corina
medical advice

[Tobiano]

I agree with cupcakemama's suggestion about the referral to Hamilton. Feel free to message me if you want more information.