Re: thank you all for sharing

[Guest guest]

Tracie, Thanks for the info. Sorry for the delay in response, your message was caught in myspam filter. Forgot to mention. I have appt. UCSF Neurosurgery Sept. 10. forpituitary mass. One day at a time.... To: Neurosarcoidosis Sent: Wednesday,

August 12, 2009 11:19:55 PMSubject: Re: thank you all for sharing

I hope you have more than one hospital ER to go to. This doc's a bozo. Apnea alarm with tachy-- and he thinks it's thyroid-- yep, it can be thyroid (the tachy anyhow) but the apnea-- not likely. I take it they didn't have you on a cpap or bipap?

Go to FSR--www.stopsarcoi dosis.org and order a copy of their brochure-- Cardiac Sarcoidosis. They also have neurosarc and sarcoidosis ones, along with one for help with calcium issues. You can order one of each for no cost, if you want extras (get them!) and give them to your docs. Also, www.sarcoidosisshar ma.com is excellant-- you can print out his Q & A and use it also.

We have to be our own best advocate-- and it may be that you need to have a letter from your neuro or pcp that states you have NS and possible cardiac sarc-- to be taken seriously. Keep it in your purse, and show it to the didiots.

Take care,

TRacie

NS Co-owner/moderator

From: shannon.stemple <shannon.stemple@ yahoo.com>To: Neurosarcoidosis@ yahoogroups. comSent: Wednesday, August 12, 2009 5:10:07 PMSubject: thank you all for sharing

Hi everyone!I just wanted to thank everyone for you kind help and welcoming me to the group. I am still in shock about how little awareness there is in the medical world relating to this illness! When I read everyones stories the symptoms and problems related to are so much alike. It isnice to know at least that I am not crazy! not yet anyway. lol..I wanted to share something. I have been terrified last couple of months because I wake up in the middle of the night as if I had been unconcious or suffocated. I am also having arrhythmias. I went tothe E.R. Last week and while they had me on the heart moniter, the apnea alarm kept sounding, along with tachycardia. When the doctor came in I tried to explain that I had neurosarc. and asked him to watch the monitor with me. He rolled his eyes and told methat I was probably taking too much of my thyroid medicine. (there is no reason to think that). He wouldn't even listen but it

dawned on me that I am having sleep apnea. When I read your stories and did the research It seems like both Central apnea and OSA are common with neurosarc. I have been thinking I must be out of my mind hallucinating or something in the middle of the night. Have never had any problems with apnea or weight before in my life so I just couldn't understand what was happening to me. So thank you all for sharing. I have to believe there is a way to raise more awareness in the medical community. We suffer enough justhaving this disease and don't need the added emotional distress of being labled a hypochondriac. Have a wonderful night.