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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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05-17-2008, 08:53 PM | #11 | |||
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If I were you, I would try to get your referral going ASAP. It usually takes several months to get in at Vandy or any other facility like it. I would also really consider getting another physician involved if your's is not returning your calls promptly. That is just not good! I know you are frustrated, I can't even begin to imagine. Do you not have any family or friends who could help you with your financial situation?? What state do you live in (you don't have to answer if you don't want to)??? Can you get any kind of government assistance?? Check out those sites I listed before. There are a lot of people who are in your exact situation and can give you a lot of advice. They come from all different states and there are lists of providers who have lots of experience with our condition and maybe someone can help you find a good provider near you who can help you until you can get into Vandy or a similar facility. Good luck and let me know what I can do to help. {{HUGS}}
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~♥~ADDY~♥~ You don't have a soul. You are a Soul. You have a body. ~ C.S. Lewis . WAR EAGLE!! . |
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05-19-2008, 10:11 AM | #12 | |||
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I never thought of compression stockings but... I have bilateral frozen shoulders and suspected myasthenia gravis... my arms are so weak that I cannot even get on regular panty hose! I tried once to go to a party and it was a pathetic failure...
I get regular stress tests and EKGs and echocardiograms and halters on demand... but the TTT, no, but based on all this, I think I will push for it. A friend of mine who has been uncannily similar has had it and also passed out so I have been afraid. So tired of doctors. Thanks for the sites. I will check them out. I am registered already at one as one of my cushing's buddies already told me about it a while ago. Thanks.
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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01-23-2009, 08:36 AM | #13 | ||
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01-24-2009, 10:36 AM | #14 | |||
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I asked the cardiologist for a TTT and she said...NO. She said it would be positive. So why bother. LOL...
I do wear compression stockings from time to time but I am weak (some neuromuscular thing) and have a hard time getting them on - plus I have to wear above the knee ones... dang, they are hard. I missed your post! Sorry...
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Cyclical Pituitary Cushing's, Addison's via bilateral adrenalectomy, Growth Hormone Deficent, Migraines, Trigeminal Neuralgia, Hashimoto's, Hypothyroid, Myasthenia Gravis? |
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01-26-2009, 06:45 PM | #15 | ||
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01-28-2009, 01:26 PM | #16 | ||
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Hi wow i cant tell you guys how happy iam to have found neurotalk Im 17 and have been recently diagosed with neurocardiogenic syncope like you guys but nothing has worked for me im on florinef labeltol and have tried other medications midodrine and zoloft i also have compression stalking that dont work lol but im very interested in starting a chat!
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10-28-2009, 11:19 PM | #17 | ||
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Hi all, I had a tilt table test on Tuesday, 10-27-09 and passed out. Thus, I have Dysautonomia. What kind remains to be see.
Looking forward to having other people here to talk about this disease. I am worn out from battling it. But I am hoping that the docs can find some effective meds soon and I get some relief. Keep this thread going--this is a difficult disease to live with and some of the cardiac problems can cause sudden death--nothing to mess with. HUGS lifesaver |
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12-23-2009, 10:36 PM | #18 | ||
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Hey There,
I am 27 and have had POTS for many years and it has been quite debilitating. I have been out to Cleveland Clinic after years of being told it was "just stress" finally have some answers, but not much in the way of follow up. I also had nuclear tests, tilts, etc ... all revealing similar results to yours. I have low blood volume and low red blood cell counts, but after 2 months the Dr. has not addressed these results, just increased my beta blocker, I have no follow up visits scheduled, and that appears to be the only way I will get answers. My insurance has changed so it's not an option at this point. I have a 2 year old son that I need to be healthy for so I'm on here searching for answers. My iron levels are generally fine, so the red blood cell count thing (anemia) seems to be attributed to something else ...my PCP is not helpful either. I was wondering what they have you doing to increase red blood cell levels and what their explanation for you is. Are they telling you are anemic but in some other "non-iron" related way? I am on a high salt diet, support stockings, etc. Knowing what they are doing to help you would be wonderful to hear. Since I have very similar findings and not alot of advice Take Care! |
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04-07-2010, 03:51 AM | #19 | ||
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01-19-2011, 01:41 AM | #20 | ||
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Since then, I have fainted a numerous amount of times. It wasn't until I fainted in front of a boyfriend that I learned fainting wasn't normal. So, it took about a year after that to find out what I had. I have Neurocardiogenic Syncope or NCS. I had a tilt table test done. My bp dropped to 60/28. The doctors first put me on Metropolol which made my hair fall out. They always wanted to give me Meclizine for the dizziness. I finally found a great doctor in Brooklyn, NY at Lutheran Medical Center named Dr. Ngo. She had me see another cardiologist after finding an AV block when I was sleeping to see if I needed a pacemaker. I did an EPS study to check my heart and I never felt it beat that fast, plus they said my heart was healthy. So now I take a medication called Midodrine. I asked the pharmacist how high should my bp be when taking it and how high is too high. She said 140/90 is the highest it should be. So, we shall see how well this med works for me. So far so good... |
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