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Everything posted by jenglynn

  1. I know this has been discussed... But just a few questions. For those of you who DON'T drive, is that self imposed restriction or by doctors reporting to DMV. What kinds of symptoms keep you from driving? Is there anyone who has had their driving privileges legally removed due to this illness? I personally have not driven since Oct. 2011 when my syncope began to escalate. Now that I think about it, I waited too long. At that point, my syncope was completely positional. I would stand up and faint so my doctor was comfortable letting me drive. Well, since Nov. when my illness progressed ser
  2. Katy & Bren, I have peripheral neuropathy and that is always how I describe my pain. Like my body is completely bruised- but they aren't there. Well, that's not true, with my syncope I'm always covered in bruises but not always matching up. I used to tell my parents I had a sunburn and they'd look at me and so.... Ummm... No.... And I'd say "No! On the inside." It is not always that way though... Sometimes the burning, sometimes the bruised and achy feeling, it could be anything, I was first diagnosed with fibromyalgia and it's still technically on my records but it never seemed righ
  3. Jangle, I am sorry you have this decision to make. I did try IVIG and Predisone. Unfortunately, I didn't do well on both. I was allergic to both... The Predisone just made swell up like a balloon, hives, itchy, but nothing too terrible. IVIG, on the other hand, was disastrous for me but that was partly my fault. I had many signs of having an allergic reaction- but thought it was just normal reactions. I also had hives and itching but my doctor told me that I was having reaction to another med I begain. The next week I went into an infusion center (outpatient) to get my infusion. All of
  4. Thanks Issie! I did download her book and have read most of it and it really seems to be me to a "T" But of course, I can't find anyone around that will even LISTEN to me. I have had 5 MRIs of the neck for whatever reason in 5 years and it is on every report getting worse every time... more fluid and more of a curve. When I questioned this... Oh, it isn't a big deal. Maybe I will email/call her. Did not know that was an option. You should be my neck... the gap between by C1 and C2 is just this gaping hole. And I have never had back pain but it is only when people get a severe form I g
  5. I have autoimmune POTS (autonomic nueropathy too), EDS and a few other illnesses. They all different symptoms that seem to relate to everything except one. So I just keep told that they don't know to treat me. My neuro called me last week and told me he could not see me anymore because of liability because he has no other ideas- and just because they found some kind of curve in my neck that they think I was born with (or result of a birth injury- forceps) and a large pool of still fluid just putting pressure on my brain. I had an MRI in 2007 of my neck and it showed the reverse curve and t
  6. Oh McBlonde... I'm sorry. It's terrible when you "might" find a beneficial drug but doesn't work out I take 20mg of Midodrine 3x a day and Adderall. Amazing how our our bodies are so different. I'm actually diagnosed with auto immune autonomic dysfunction neuropathy.. That could be a difference? Who knows? No one understands this stuff
  7. Wow- what a blessing for you, Charmed Liz. I'd already been approved by my company's long term dis. Plan, in a wheelchair (rarely) because I've been mostly bed -ridden since Oct-Nov., multiple daily syncopal episode and 12 concussions from the literal hundreds of fainting. It's been a long story, but my case has been pretty severe so it seemed outlandish I wouldn't get approved... But you never know. I'm just keeping thoughts and prayers with those of you who really need an approval, medically & financially. Jen
  8. Yes, I was totally SHOCKED!!!!!!!
  9. My experience was that doctors are extremely hesitant to prescribe it. It's addictive, controlled substance. It's an amphetamine. However if you NEED it because your body needs the dopamine then you don't that hyper response. McBlonde, MANY have a crash. That's one of the biggest problems. Did you take Extended Release or the short term? XR would be capsules. Short term a tablet. My son, 11, takes 15 mg XR. We also have a short term 15 mg dose if he needs it for a crash. However, after the first 3-5 months the crashes stopped. So he keeps with 15 mg a day. I take 30 mg XR in the morning a
  10. Thanks Issie! I will do that! Hopefully it will educate me. I had no idea I had this "issue". Is it actually serious? If so, why don't our neuros do any of the xrays etc?
  11. Hi Everyone, I am sitting in here... a little bit in shock. I was actually APPROVED on the first time for SSI. I just can't believe it. I realize that I am not at all happy with the fact that I am considered "disabled" but it will be a financial help. But I am humble that I was approved on the first time and I don't have to go through what so many of you do. I hope it is just a matter of time until they change the requirements and Dysautonomia is added to their list of accepted condtions. I guess my approval is a little bittersweet because I know there are so many of you suffering as equa
  12. Sugar, I was diagnosed with this in Dec/Jan and I am in the same boat. I cannot find any two doctors from anywhere to give me the same answer. It is so confusing. I spoke with a pathologist a couple months ago and she said that our condition is just a guessing game in the medicial community. She has gone to different conferences about autoimmune or autonomic conditions and without being told that new information has been found- every time there is a complete conflict about several things than the last time. Like Issie, I have low antibodies but mine are IgA and mine is called hypergammaglo
  13. I've been bedridden with this since Nov. 2011. I am STILL there.. This flare began in April of 2011 but my fainting increased so drastically in Sept-.n- Oct. I'd go from 100/75 65 HR to 30/10 180+ HR Many times they couldn't get a pressure at all. This would happen so quickly it seemed I has no time before there my blood to my veins. I also have very open, stretchy veins due to EDS. I was put on bed rest on Nov. because in 3 weeks I had 4 concussions (had a total of 12). I was hospitaliized from late Nov. - NewvYears, I don't always stay in Bec, I crawl around to the restroom, to tak
  14. Hi Tom, I'm having a hard time answering.... I'd always had fainting,dizziness, tachy and low BP since I can remember but no one ever made a bid deal about. My family doctors that I saw over the years always said the same thing "Some people just faint when they stand" because it was always changing position. But I was never diagnosed and those spells were rare (1x every2-3 months). In Aprii of 2011 this flare began suddenly and has just gotten progressively worse. In fact no one can even figure out how to treat me. It has a frustrating year+ that's for sure. Good luck and I hope you find t
  15. Wow... Timing here is always perfect... I just found out I have moderate to severe scoliosis and my neck is curved in the opposite direction it's supposed to be. It's pretty scary. I've seen two chiropractors now- dont know each other- and they both said the curve is putting direct pressure on my brainstem on ANS, and my whole cervical spine is full of the same fluid applying so much pressure that a lot of symptoms have changed. My legs will get tingly and numb and for about 45min-1hr I can't move waist down. When I have syncope, now I'm having seizures with incontinence. I have gotten
  16. Oh Bren- I hear you. It seems as if I spend half my life angry and the half apologizing!!!!! You'd think people close to me would get it would get it. I wasn't like this before. It's a cyclical behavior. I'm an emotional basket case. And I feel ganged up on when people get together to discuss "JEN". Do you think this is helping??? I feel worse than anyone. I don't even know that raging woman and I guarantee no one dislikes her more than I do!!! Thanks for all your replies on a very difficult subject! Jen
  17. I'm still waiting for my Round 1 denial. Even though I can't stand 30 seconds without fainting I'm sure some job will be appropriate How long does it take to find out? does anyone know? I applied in Nov, toward the beginning, so it has been 7 months. Do they have a timeframe? I just want to get phase over with one over with so I can move on !!! It was hard enough to actually apply. For all of you denied- be patient and for those of us waiting- positive thoughts maybe???? Lol Jen
  18. There are so many.... I guess in my personal case it would have to be syncope due to all the concussions. Physically, there are other that feel worse but the long term effects of the concussions scare me so much that it just my activities to nothing. Jen
  19. Midtra, I woke up right as she was poking me. I asked her what that was and when she told me I told her I was getting IVIG infusions and am not supposed to get any vaccines. She got snippy and said that did not include the flu vaccine. I had JUST read the exact opposite the night before. I told her that my info I'd not match up and she needed to find the DR (neuro) who ordered my infusions. He also promised when I was asking questions about getting IVIG, which I knew nothing about, that I need not worry- "this is a benign procedure with no known risks." Really. USUALLY you sign and ar
  20. Wow... I am very sad that any of you go through this. In my case, and it sounds like many of yours, it can change from anger to rage very quickly. It is so out of character for me. Before I had this flare, I've never had anything like this occur. I was quite young when my POTS/ Autonomic Dysfunction Neuropathy began but this has been the most terrible by far- no comparison. I have always wondered if it was from my concussions or more hormones. I had been thinking that the effects of so many concussions might take longer than a year, give or take, to manifest. Monstrosity, Mine seem to bu
  21. Hi Everyone, This doesn't happen ALL the time, I think there must be a routine for it, but I can't pinpoint it. But I will have these spells where I will have uncontrollable, scary, and emotional bouts of rage and anger. I turn into this person that I hardly recognize. I yell and scream at my husband. I swear and cannot help myself from using any profanity I can think of. I throw things. I have to be physical but of course that is of course a concern with the amount of anger. m It seems to occur after a bump after the head. I have had it a few times occur without any head trauma or conc
  22. Just for purely stubborn reasons, I never get the flu shot. Once, about 9 years ago, I got the shot, and had the worst case of the flu. So I swore I wouldn't. It is practically impossible NOT to anymore I had already been diagnosed with Autonomic Dysfunction Neuropathy while I was inpatient at a hospital in Dec. and had started IVIG treatments and while I was sleeping one of the nurses came and gave me one. It was written in my chart in error I needed the shot, as you are not supposed have the shot while on IVIG. I did get pretty sick. I reacted to the IVIG pretty much right away but
  23. Blue- , Yes... I have very severe syncope and had concussion 12 or 13 last week- even crawling. I have been bed ridden or crawling to & from the restroom SINCE Nov!!!!!!! I'm about done. I have pretty severe Othostaic Hypotension - I oke this morning feeling "okay" and it was 48/32. My body is an absolute nutcase I will usually have 2-2.5 days with no sleep- sleep that night - and wake up feeling fine. And I'm rarely sleepy during those days. But o the other hand, I can get more than nough slep for a week in a row and be tired?!?!?!?!? J
  24. OMG... I have to of ALL the drug I've my Adderall has given me the most positive results. It doesn't "cure" my autonomic issues of course, just makes it easier to focusing concentrate and clear out the cobwebs. I take 30mg ER 2x a day ( I think). Interestingly, it never keeps me awake, doesn't make me jumpy or "wired" (although the first day or two I was on it my hubby said I did NOT stop talking). With all of my concussions, the brain grogginess and inability think straight was driving me crazy. My endo said that I had a slight shortage of serotonin and a larger shortage of Dopamine. My
  25. Interesting..,, I've never tried alcoholic drink since this flare a year ago. A PiƱa Colada does sound really yummy..... Hmmmmm. Something to think about Jen
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