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kitshalleen

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About kitshalleen

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  1. Hi everyone! I hope this finds you well. My dysautonomia makes me almost completely nocturnal and I'm pretty sick, so I have to live with my parents. I'm very grateful for this, but it ends up that they are most of my human contact besides my doctors. Anyway, I was looking for other people who are meet me in my same position. Hope some of you are feeling good! Kit
  2. thanks so much everyone. i've had a lot of the tests, so i'm not sure if I would go as a research patient. I had an abnormal qsart which is why they wanted me to be tested for sfn. I had just always wondered about the ivig. probably because nothing has really helped me. anyway, my best to all of you. i'm so glad to hear such good things about Vanderbilt.
  3. Thank you so much for the responses. Can you tell me how they tested for the small fiber neuropathy? Did they do a skin biopsy? Is that why they offered you the IVIG? I can't imagine having 4 kids with this disorder. I give you a lot of credit. Kit
  4. sorry I wanted to ask something about salt loading. that's been talked about for years. does Vanderbilt do it differenty? how much salt do people take? thanks:)
  5. Tthanks so much for the response. I should have said a little more about my condition I guess. I have autoimmune issues, maybe lupus, but they are mostly watching me. I got dysautonomia after a virus and have all of the symptoms except for the high heart rate. I know that sounds weird. I have the orthostatic issues, insomnia, constant headache, interstitial cystitis, fatigue, etc. Cleveland clinic was fine, except that I tried everything. Dr. Grubb has been following me, but we ran out of treatments a couple of years ago. Salt was the one thing that dr. grubb was not into because he was
  6. Hello fellow dysautonomiacs I hope that this finds some people doing well. I was thinking of going to Vanderbilt. Is there any doctor that people would specifically recommend there? I had heard of Dr. Raj, but I don't really know. I would appreciate people's responses whether it is private message or not. Thank you so much. Warm regards, Kit
  7. Hi everyone, Hope this finds you well. For those of you who have Interstitial Cystitis/Painful Bladder Syndrome, here is a study showing autonomic dysfunction in patients with Interstitial Cystitis, thus linking Dysautonomia and Interstitial Cystitis together. Anyway, here is the link. http://www.ncbi.nlm.nih.gov/pubmed/22907988. Finally things are starting to come together. Take care, Kit
  8. thanks for teh responses everyone. my ic is unrelated to my diet, and the atarax does not help. i've tried everything. i live near one of the hubs of ic research, and eventually they just decided to put me on narcotics. they help, but i hate the idea that i'm on them. i dont' know why, but it makes me feel embarrassed. the pain is horrendous though, so i'm definitely glad that there is something that helps. i hope that none of your cases get as bad as mine.
  9. hi everyone, i was wondering if there was anyone on this forum who also has interstitial cystitis (IC). i have a really bad case, pain-wise, and the pelvic pain has actually been so bad, that this disorder has taken over the dysautonomia. I actually have to take narcotics for. Anyway, I just wanted to see if anyone with dysautonomia had it, because I figured someone with both disorders might be someone who I could identify with even more. take care, kit
  10. bananas, that girl said the most ridiculous/rude things, that i don't have appropriate words to respond. everyone's life is worth something, and everyone deserves to be happy. you were dealt a bad hand. it's not your fault. you cant' control it. before i even finished reading your merssage, i was thinking that i was going to tell you to cut her out of your life. i am so proud of you for doing that. it can be very difficult to cut someone toxic out of your life, especially when it's hard to make new friends. i have probably kept people in who i shouldn't have, or missed people who left
  11. hi everyone, i know that there was a post about this a couple of years ago. anyway, i'm 36 and still living at home. i know that i'm very lucky to have a place to live, but i still feel sort of embarrassed. now my dad is starting to have some more serious health problems, so soon he'll need me too. i have no idea how i'll help take care of him, since i can't even take care of myself. anyway, it is less lonely to live with him, but i also feel sort of resentful, because originally this was supposed to be my place, and then my dad moved in when my parents divorced. i don't know. either way, i do
  12. hi everyone, i can't remember if i already posted about this, but i dont' think that i did. anyway, recently i've been having bouts of excessive eye blinking. i can't stop it. i went to the eye doc, who said my eyes were fine. it doesn't seem to be my eyes, but my eyelids, and when it happens i can't stop it. even when i keep my eyes closed, there are little tremor-like things going on. it's like they are still trying to blink. i can't seem to tie it to anything in particular. it's not bright lights. does anyone else have anything like this? thanks, kit
  13. I just went to cleveland clinic and was diagnosed with aag. they didn't offer me ivig either. i would like to try it, because i have tried over 100 meds. i've been sick for almost 11 years now. i don't know who to go to that would give it to me though. so i hear you guys. it is very frustrating, and it sounds like docs really aren't sure who it will help or not.
  14. Thanks so much for the response. Now if I could just get my internist to do the testing.
  15. hi everyone, i hope this finds some of you doing well. i just went to the cleveland clinic and had a bunch of testing gone. i didn't really understand one of the tests though. i had a blood volume test and my blood volume was a little low, but my red cell volume was low by 24%, which the doctor said could mark anemia. i am not anemic, so he said that i should have my internist run further iron studies or to see a hematologist. could anyone shed more light on this? thanks so much, kit
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