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"Re: awake symptom list"

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by: sandra pember
on 7/22/2005 at 5:41:41 AM

Hi, please can someone let me have info on ''awake symptoms''.......i've got central core disease.... and my head suddenly goes very hot and perspiration drips off me and i don't feel at all well. Even mild exercise ''wipes me out'', and my legs get very stiff and painful .......even after doing 'stretch' exercises to avoid contractures. Here in the u.k. there is very little known about this subject and if I go to see a doctor they just shrug their shoulders and give me painkillers..which don't help at all. I have emailed mhaus a couple of times, but my emails come back as '' undeliverable''..!!!!!!1 Thanks. Sandra.


by: Steve
on 7/22/2005 at 9:34:31 AM

Sandra,

Sorry to hear of your situation...

Here's the POC info I've used in the past...good luck:

Fay Kellogg fay@mhaus.org (607) 674-7901, x203

Steve


by: Steve
on 7/22/2005 at 9:35:58 AM

Clarification, the e-mail address is: fay@mhaus.org


by: sandra
on 7/24/2005 at 2:26:16 PM

Thanks Steve, but that IS the email address I'm using..!! I filled it out on this site.......under ''contact us''......the mail system is keeping trying to deliver it unsuccessfully.


by: megan gilbride
on 7/24/2005 at 11:15:30 PM

My 17mo. old daughter also has Central Core Disease and has been treated for MH. I'd like to talk more w/ you about your CCD? Best of luck, Megan Gilbride megangilbride1@yahoo.com


by: sandra
on 7/25/2005 at 11:29:28 AM

Hi Megan, I'm afraid I'm one of the '' late onset'' patients.... very late !! Started in my early 50's....!! However I'll email you direct later this evening.....but, there is a very good ccd group, which you and others might like to access, and there are mums with children on that site. It's a very friendly site. centralcoredisease@yahoogroups.com --- it's run by Jessie Keller. Well worth a look.Sandra


by: Steve
on 7/29/2005 at 3:49:56 PM

Sandra,

Hello there...

If you haven't yet received a copy of the Awake symptoms...and you're willing to post an e-mail address...then I'll send you what Ms. Kellogg sent to me.

I'm hesitant to post it on this board, because Ms. Kellogg seems to be also sending an MH related questionnaire w/ the list (as she seems to be collecting data) and if I post the awake symptoms...that may negatively affect her ability to collect data for what I sure is a noble purpose.

Steve


by: sandra
on 7/30/2005 at 5:01:50 AM

Hi Steve,

No, I've still not had any response from Ms.Kellogg to my request. Really, I'm curious as to what is contained in the ''awake symptoms'' list. Does it refer to solely post op. situations? What I'm looking for information about is, are there any other situations, other than anything to do with anaesthetics, which can trigger an M.H. type of situation.? Like,,,,, If I get too hot, or walk a bit too far........everyday situations....... where , after doing very little ''out of the ordinary'' I suddenly feel really ill and my head drips with persperation and I need to drench my head with cold water ...and try and get cool very quickly......... could this be anything to do with M.H. ? I've asked my G.P.....who shrugs his shoulders and utters those magic words '' I don't know..!! '' I'll give you my email address if necessary. It's just that I've not come accross this referance to ''awake symptoms'' before. Thanks, Sandra.


by: Steve
on 9/22/2005 at 4:58:25 PM

Sandra,

If you e-mail me at:

Scheckel5150@yahoo.com

Then I'lll send you the list of Awake Symptoms....

V/R,

Steve


by: Dori Kiska
on 10/7/2006 at 5:53:58 AM

I just read your text and couldn't believe I found someone else with Central Core Disease. I had a problem with awake symptons last fall and ended up in the ER. Between the Central Core and the MH - all the docs were out at the desk searching online!

I'd love to talk to you about your symptoms of both diseases. My mother had central core, as do 2 of my daughters. We actrally had to diagnose ourselves with the Central Core - verified by muscle biopsy - since we were misdiagnosed twice by MDA.

I've been checking the web site this morning since I have a sinus infection. I don't get cramping with my awake symptons, but I get tachycardia with any kind of decongestants, so I end up suffering through colds.

Please write if you can, I'd love to chat with you!


by: Steve
on 10/8/2006 at 10:17:58 AM

Dori,

Greetings...

Not sure if Sandra had responded to your request...(one can never be certain how frequently others consult w/ the message board)...that being said, I wasn't sure if you had noticed Sandra's reference to the CCD Yahoo Group were you might be able to find additional info/support:

http://health.groups.yahoo.com/group/centralcoredisease/

Good luck to you..

Steve


by: cathy
on 3/26/2008 at 3:28:49 AM

I went to the dentist and he use N20 gas {laughing gas } on me. I felt nothing from this gas until it was at 70/40 then I saw black floaters, got sick to my stomach, and got hot as fire all over. The dentist rush in and started washing me down with cold water. After a while I felt ok but he would never say what happen.

After looking up what I could on the net I found this site and wonder if this was NH that happen to me.

I have had many muscle problems {like muscle cramps}for years. And times when for no reason I feel like I am on fire. This has gone on most of my life.

I also react real bad to most meds. And the Dentist could not get my tooth numb all the way.

Anyway I am trying to get info. on this.

Thanks


by: cathy
on 3/26/2008 at 3:31:21 AM

Sorry I think I posted my question in the wrong spot.