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Everything posted by kitshalleen

  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. maybe I should have given this a different title. I'm sort of trying to get the crowd that doesn't have a lot of family. right now my parents are helping me, but at a certain point, they won't be, so I was trying to get people in the same situation. I guess i'm looking for the people who are too sick to date, but dont' have a lot of social interactions. thanks a lot for the suggestions.
  3. yes and no. it's sort of like a support grop. it can be depressing, but also has a lot of benefits. anyway, I don't think that will be happening. however, when I visit3ed my grandma in a nursing home, which was very niice, I kept thinking tha ti belonged there. that was depressing, because everyone was quite a bit oler than me, and well there are preobably a lot more deaths, but it was a nice place. anyway, I was really just looking to talk to people in similar situations. maybe make and online friend idon't know.this isa great place. okay should try to sleep. take care, kit
  4. HI everyone, I hope that this message finds some of you doing well. I think that my title says it all. I got sick in my 20s and it's 13 years later. I'm too sick to date, and I am definitely not having kids. Sometimes I'm so tired that I can't feed myself and it terrifies me. I don't even think that the doctors understand why we are so tired. Actually, that's what my doctor told me. Anyway, I'm also have a ton of pelvic/abdominal pain. That's usually my worst symptom, and that's from interstitial cystitis. Anyway, I thought it might be nice to have someone else in my situation to talk
  5. thank so much Arizona girl. I really appreciate your support and links. I don't know what I have. I definitely have dysautonomia. I had an abnormal qsart and they told to have the skin biopsy but also told me that there was no way to treat it if I had small fiber neuropathy, so I didn't go back. I don't have the tingling, burning, etc. the qsart just showed abnormalities. there is a doc at u of Michigan on the site you gave me, so i'll go and get tested, and then see what happens from there. i'm still confused about AAG. it sounds so similar to dysautonomia. do you have to have the sp
  6. hi everyone, i hope that everyone is having a good non-potsy weekend. I was wondering if anyone had a Michigan doctor or a doctor who did tissue samples for small fiber neuropathy. I had an abnormal qsart and the doctor wanted me to follow up by finding a doc who does tissue samples for small fiber neuropathy. that's sort of hard to find. thanks, kit
  7. 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.
  8. 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
  9. 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:)
  10. 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
  11. 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
  12. 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
  13. 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.
  14. 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
  15. 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
  16. 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
  17. 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
  18. 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.
  19. Thanks so much for the response. Now if I could just get my internist to do the testing.
  20. 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
  21. hi everyone, i hope that this e-mail finds you well. i live in an area where there are no dysautonomia doctors. because i'm basically homebound, i don't have a support system. my parents are getting older and unable to drive me to far places. i need to see my pots doctors, but one is 1.5 hours away and one is 3.5 hours away and i would need to stay over night. does anyone have ideas of places that could help me with the transportation? i know that i would be very expensive, considering i'm paying for a couple of days of someone's time, plus the hotel room. unfortunately, i'm not affiliated
  22. Hi everyone, I hope that this message finds some people doing well. I have been sick for over 10 years and am a patient of Dr. Grubb's. I adore Dr. Grubb, but unfortunately, he has not been able to help me. I have thought about going elsewhere to have some autonomic testing, since Dr. Grubb only does the tilt table test, and I've never had any other specific autonomic testing. I'm just not sure where to go or even if the testing would help with treatment. Does have a Valsava maneuver or sweat test really help with treatment or just with diagnosis? It is very hard for me to travel so I'
  23. hi everyone, thanks again for the responses. i would love to have an electric wheelchair because i also can't push myself, but i don't have a van or the energy to dismantle it and put it in a car, and no one to do it for me. does anyone have any ideas for that? i assume that you have a van or a lift to get the wheelchair in the car? have a good weekend everyone! julie
  24. thanks so much for the response. can you fit the wheelchair in the car without dismantling it? i'm worried that these chairs are going to be too heavy for whoever is driving me. thanks again, kit
  25. hi everyone, so many of the other wheelchair posts have been helpful. i just called spinlife to see if they had local stores, and they said no. this will be my first wheelchair, and i want the super ultra light ones, but i've never been measured, so i don't want to order online. how did most of you get yours? did you go to a local store and get measured and then order it online based on that? i know that's sort of rude, but i was just wondering. thanks so much, kit
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