prettyinpink Posted September 25, 2009 Report Share Posted September 25, 2009 Hi! I'm a 22 year old physcial therapy grad student. I've been a type 1 diabetic since I was four years old. I was also diagnosed with auto immune angioedema, celiac disease, NCS, and Hashimoto's Toxicosis-total thyroidectomy. I was in the hospital in august 09 for a week because my autoimmune angioedema flared which causes anaphylaxis and requires tons of IV meds. I got out of the hospital and could tell my pressures were running low. I went to see my cardiologist 2 days after my discharge. He thought it was just from being in the hospital. He prescribe midodrine for a few days. The next day I walked into my kitchen and passed out. I stood up and passed out again. I called my dad who called his friend who is a cardiology resident who got me an apt that night with Dr. Grubb. By 10pm that night I had a diagnosis that I knew very little about but enough to know my life would never be the same.Im allergic to mestinon and the florinef is making my blood sugars high so I stopped that 2 days ago which made everything worse. I'm still in PT school full time.Oh and I have an amazing 1 year old service dog that can tell by my smell when my bloodsugars are out of range because I can't feel it changing. I'm sure I'll have a million questions later but for now I just wanted to say Hi!Valerie Quote Link to comment Share on other sites More sharing options...
sue1234 Posted September 25, 2009 Report Share Posted September 25, 2009 Welcome, and you'll enjoy the posts and points/issues brought up on this board. We all learn alot and have good conversation about all aspects of dysautonomia. Quote Link to comment Share on other sites More sharing options...
erik Posted September 25, 2009 Report Share Posted September 25, 2009 Greetings! I'm sure you'll find this forum a pleasant and informative resource.That is lousy to have potentially helpful meds blocked by other condition or circumstance. I hope that you can hone in on some helpful treatments. People here often have handy workarounds or can at least relate to the various dilemmas involved.That sounds like an awesome doggie! Sometimes supportive spouses eventually sign up and participate in the forum too... perhaps some day your dog will join us??? Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted September 25, 2009 Author Report Share Posted September 25, 2009 She's amazing. She's a HUGE motivation to keep my moving. I should mention i'm on a high salt, high gatorade diet lol. Take adderall. Ride a recumbent bike almost daily.(these are just my POTS interventions) But I still an only stand/walk for a minute before I pass out. I'm suppose to start DDVAP i think thats what its called. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted September 25, 2009 Report Share Posted September 25, 2009 Wow, Valerie! You sure have had a lot to deal with physically. I certainly admire your persistant attitude! This forum is so supportive and very knowledgeable. Welcome!Also, congrats on getting diagnosed so quickly!!! Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted September 26, 2009 Report Share Posted September 26, 2009 Hi Valerie,Thank you for sharing your story. I am glad that you have a good doctor in Dr. Grubb. I have never seen him, but have heard good things about him. Welcome to the forum! I hope that you will find us to be supportive and informative. Kudos to you for pursuing PT school. I had to leave pharmacy graduate school just over two years ago due to the severity of my dysautonomia. I was less than 9 months short of graduating, but just too ill to manage clinicals. I look forward to reading your posts. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted September 26, 2009 Report Share Posted September 26, 2009 Wow. That has to be the fastest-ever dysautonomia diagnosis in the history of mankind! Congratulations! That's crummy about the drug allergies. A lot of us here have problems with drug reactions of all sorts, so you're in good company. They sometimes prescribe Effexor for migraines. I couldn't take it because it TRIGGERED daily migraines. Go figure!Anyway, welcome aboard!Mrs. Burschman Quote Link to comment Share on other sites More sharing options...
prettyinpink Posted September 26, 2009 Author Report Share Posted September 26, 2009 Thanks! I suppose to start taking DDVAP tonight as a replacement for the florinef. Any comments on this medicine-how well it worked, side effects etc. It was a SUPER quick diagnosis. The symptoms started sat and I was diagnosed wednesday. I may have been having symptoms earlier like fatigue and mild tachycardia but being a type 1 diabetic and feeling highs and lows all day long makes other symptoms not as noticeable. I can relate to waiting forever for a diagnosis the autoimmune angioedema was a disaster. Quote Link to comment Share on other sites More sharing options...
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