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Auntwinnie

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About Auntwinnie

  • Birthday 01/22/1968

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  • Gender
    Female
  • Location
    Southwestern Ontario
  • Interests
    Children, Children with special needs, scrapbboking, sewing, various crafts

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  1. Cupcake momma. It was In London. Very nice people just not what I expected. Hanice yes he did suggest a stationary bike. I have been steadily increasing my cardiac activity level over the last year-I am a very busy mother of 5. I don't sit around. I am overweight but not horribly. I am adding more specific exercise but as of yet it hasn't made things better.
  2. Thank you for your responses. My husband and I both walked away saying we should be happy to not be diagnosed with this - however it still leaves me with no diagnosis and horrible presynocope that is making it hard for me to live a normal life. Over the past year I have been consciously increasing my activity level trying to get into better shape and because everything I read is that no matter how crummy I feel I have to work on increasing my cardiac tolerance. Has anyone else had a TTT that was only 5 min and with no blood drawn or medication given.
  3. I was so excited to have an appointment today with a neurologist that specializes in Autonomic Function. I wasn't sure what to expect as this was set up by a neurologist that I saw in Jan-I wasn't sure what they were looking for or what tests they were going to perform. When i got there they took me into a room with a TT so I was thinking great-here we go. He explained they would do 4 tests. One was a sweat test, one a controlled breathing test breathing, one a test where I blew against a pressure and then a 5 min TTT. they had difficulty getting a baseline on the sweat test and dried my leg a few times then decided to perform the test anyway. Then they couldn't get a baseline on my finger BP cuff because of my raynauds-but also decided to proceed. I couldn't see all the numbers but my heart rate was around 70 when resting and went up to 95 average for most and the blowing one around 100. During and after the blowing one I was very dizzy and bad head rush. They put me up for the TTT for 5 min. and my heart rate went around 95-100. We finished the test and the dr sat down at that point and asked about my symptoms-he asked specific questions about thirst, SOB, what causes me to be dizzy. I know I have most of the symptoms. after that he said he doesn't think I have an autonomic issue-he doesn't think I am developing one and that perhaps I am deconditioned from having less mobility due to my scleroderma. He recommended I increase my exercise tolerance slowly by increasing the strength in my legs-like pilates. I just don't know waht to think. I didn't know about this appointment until yesterday. A couple months ago I went to my family dr with info on POTS combined with my symptoms and he began a referal to a dr in Hamilton that specializes in POTS. My husband and I are wondering if I should keep that appointment and have the TTT redone by him. Id love input from ANYONE about what to make of this appointment. I don't have any numbers right now-I will get them when he sends the written report to my family dr I hope.
  4. Imagine my surprise when I went to the mail today and pulled out a letter that says I have an appointment tomorrow with Dr. Kimpinski in London Ontario. When I initially found POTS and how many of the symptoms I had I went to my family Dr and talked to him about it and he felt it was worth a try. He was trying to get me an appointment in Hamilton. Last I heard Hamilton wanted more information before they took me. Back in January I had seen a neurologist in London who was fantastic and was really stumped by my symptoms but did come back to me before I left and said there was something very rare that she could send me to be tested for but my husband and I didn't remember what it was. So here while I was waiting for an appointment set up by my family Dr this was set up by my neurologist. We are very happy and excited to have the appointment tomorrow but I'm not familiar with this dr. I tried to research him and it looks like he is a nice guy and has done some articles on disautonomia. Has anyone seen him or know anything about him. Also what questions should I be asking or ready for
  5. Many of us with scleroderma take it for esophagus dismotility. We can still get it in Canada and many US people get it shipped to them from Canada
  6. I read the article but I don't have ardicsl background so some of it I was unsure of. A few years ago I had a really bad experience at the dentist. The first time when the dentist gave me the local for a filling I felt a little off but didn't say anything. The next time as the anesthetic hit my blood steam I started to pass out. They sat me up and the dentist assumed that the anesthetic hit my talangelactasias ( multiple blood vessels from my scleroderma). My rhumetologist didn't think it was that but perhaps I had an allergic reaction to the anesthetic. I only see the head dentist in my office now and he gives me only a little epinephrine and goes very slow as he does the anesthetic. Is this the type of issue that can be present with pots? I haven't had my vitals monitored at all at the dentist
  7. I recently saw my family dr and asked him about a referral for a TTT. I told him I had come across POTS and was surprised how many of the symptoms I had been complaining about were in it. Mainly. Dizziness, tunnel vision with distant hearing, brain fog EXTREME fatigue, weakness and shortness of breath. I have been sent for test after test, specialist after specialist and no one can explain these symptoms- I do have limited scleroderma with mild PH and severe raynauds but I am told these symptoms aren't because of those illnesses. My family dr agreed to the referral and while I was there he gave me copies of some tests I've had done over the last few months. One was for a cardiopulmonary exercise test. It says that the test was stopped early due to dyspnea and that I had a heart rate that was excessive at 162 bpm (93 percent predicted) no pulmonary vascular disease. I'm just curious if this excessive heart rate would meet anything to do with dysautonomic issues like POTS. I have struggled for so long with all these issues I'm sure you can imagine I'm anxious to find a reason for it
  8. 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
  9. 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
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