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joalmon

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Everything posted by joalmon

  1. Did not mean to interrupt the thread here, but I'd like to echo Julie's remarks. Today was my first day here, and as a result of the post, so many of you have offered very good advice and have been so very supportive. I appreciate it from the very bottom of my heart!
  2. Generally, it's my hands that shake. What the dr's say: "you've got tremors." I'm in the wrong line of work when others can collect co-pays for parroting back information! I've had tremors both when I'm doing nothing at all and when I'm actually trying to work. Thanks everyone for the well wishes. I made contact with one of the dysautonomia foundations this afternoon and got a lot of helpful information along with names and numbers for doctors in my local area. And Sunfish, call me whatever you like. Jo, Joalmon, Anne...it all works. :-)
  3. Was wondering if anyone else here has problems with severe neck pain. I literally wind up sitting very often with my head tilted over whichever shoulder to alleviate the amount of dizziness, feelings of approaching syncopes, etc. The other issue is that seemingly out of nowhere, I shake like a Parkinson's patient. I don't know what brings it on, and I don't know what causes it to stop. The episodes do not tend to pass quickly. Can anyone here advise, give information, etc? Much thanks in advance.
  4. Anyone able to recommend a GOOD dr. like this anywhere in the southern US? The last 2 weeks especially have been just like Julia's original post here. I pretty much sit and cry because I'm at my wits' end, and folks here don't won't to help because MOST of them haven't heard of dysautonomia. The dr. I see now has heard of it, but there needs to be a marked step up in what we are doing. It sounds like some folks here are lightyears ahead in treatment options, etc. and I've been at the dysautonomia clinic here going on 2 years. I feel like it should be impossible by now to shed another tear, but it's stress relief right now. My family just does not understand (though they are trying) and there is no REAL help from the medical community to this point. Would it be "insider trading" to recommend folks buying large amounts of stock in tissue companies like kleenex and puffs?
  5. Ernie, I am so sorry for your experiences. Unfortunately, they don't seem to be at all uncommon. Though I have the actual diagnoses, I'm finding a hard time finding ANYONE willing to treat. None of them seem to understand that this whole thing has MULTIPLE symptoms. I have been made fun of, put down, sent up for psych evals that all came back fine - much to THEIR surprise...talk about degrading! I feel like I'm paddling upstream without a paddle right now. I've lost my job because of it and am quite honestly very discouraged. Trying to get disability because I have both dysautonomia and fibromyalgia...and they seem to feed each other. I'm positive that I'm not the only one on this site that understands the nature of fighting for SSI! I think these folks need more than a swift kick...though I wouldn't wish it all on my worst enemy, I believe if they had to experience it for 48 hours, views of all this would be very different. I just know that I am beyond grateful to have run across this site today. Though there is no physical relief from it, the emotional release has been beyond helpful. It's been the bread crumb of reassurance that I haven't lost my mind. Thanks to all who have posted here!!!
  6. JoeJack, So sorry that anyone else deals with these things. It is very frightening, and seems to be very difficult to get doctors to understand and BELIEVE until you have a really extreme reaction. Sad commentary. Though I have not found a permanent "fix" to the problem, I'm seeing a nutritionist who works with lots of fibromyalgia patients (since I've got that problem, too.) His name is Dr. Rodger Murphree. His contact number is 205-879-2383. I am still hyper drug sensitive, but there has been at least a little help there. Patricia...oh, I am so sorry but SOOO understand. I use what I call the "lick and stick" method. I have to open the capsules of the medications. I then lick the end of my finger tip and however many little pieces stick to the finger, that's my dosage for the day.
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