kitshalleen

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

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.

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

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 to. I've tried this before, but sometimes we're all too tired to e-mail. I know that it's unhealthy to worry so much, and I'm trying to live in the day, but it's always in the back of my mind. Anyway, are there other singletons out there? Take care, Kit

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 specific autoantibodies to aceytylcholine receptors. I have autoimmune issues and autoantibodies just not those. anyway, thanks so much. also I wonder why more people aren't using ivig since it seems to have helped you so much. i hope that you are doing okay. kit

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

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.

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

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:)

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 worried that it would hurt my head, since that has been a major problem. I have major vasoconstriction in my head which is what makes it hurt and what limits the blood to my head. Some of my past posts were probably when I was really searching. for a long time I thought that interstitial cystitis was menstrually related but it wasn't. the only follow up the Cleveland clinic suggested was getting tested for sfn, but they said there was not treatment for it, so I didn't do it. how did you get tested for it and who gives you the IVIG? that's been one thing I've always been interested in. and yes I've had this for 13 years, so I've been here for a while, but mostly was too tired to write too much, and didn't have a lot to offer. I would like to get more involved though. thank you so much for the response. kit.

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

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

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.

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

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 me on their own, who i shouldn't have. i expect people to be good, but not everyone is. anyway, back to the original subject. i know that i'm very lucky to have parents around. i spend way too much time being terrified of what's going to happen wh en they pass away. i am definitly too sick to date, and would not want to bring someone else into this right now. i go to the doctor at least once or twice a week. i'm always trying and searching for something new. it's exhausting for everyone. and it is really wearing my parents down. my dad has always had a depression problem, so this certainly doesn't hellp. my mom who lives close by is around a lot, but i've worn her out by talking about my illness so much. right now, she is visiting my brother, and my brother has made it clear that she needs a break from my illness. i understand and agree, but it's hard. i guess that it kinds of scares me. i've been since since 1999, and i think that i just dont' feel safe in my body. as for teh embarrassment, well clearly that is not one of my top problems. however because i have other health problems, like interstitial cystitis, wh ich is the most painful thing, and has trumped the dysautonomia, i am on heavy-duty pain meds, which happen to give me more energy. this was great until i went out and saw all of the years i had missed. plus i went to a knitting club, and i saw the looks i got when i said i lived with my dad. i felt like a freak. the truth is that originally i didn't need to lvie with him, but my parents were going through a divorce, and then as i got worse, i did, and so i probably have resentment. sorry this e-mail is all over the place. i think that i'm finally dealilng with the issues, rather than stating, "i'm tired". anyway, defionitely need a support group, so glad this one is here. anyone who wants to talk one on one, pm me. when i get a chance, i'm going to do that too. i find that to be a little easier. take care, kit