Wow! What a great post!!!! I will have to agree with you on what you have said here. My cousin and I (both with FSHD) were just discussing this week how...
OMG. I am sorry to learn this. Wayne, if you are hanging around, take good care of yourself. Paul, your old friend who thought you were on hiatus ... quite...
I've posted to Flickr some photos of Dan's Testimony. http://www.flickr.com/photos/theflyer/sets/72157600031042172/ Don ... [Non-text portions of this message...
My guess is, from what little I know about scientific experiments and studies, that our disease is difficult to study BECAUSE it has so many different ...
Thanks Don, nice photos. Ray :-) ... From: Don B To: fshsociety@yahoogroups.com Sent: Monday, April 02, 2007 1:22 AM Subject: Re: [fshsociety] Re: FSH Society...
Our son Mike has created this blog to keep family and friends up to date on Annabelle's back surgery and recovery therefrom. He has given me permission, even...
Thanks for the photos and its been over 10 years since I saw Dan-He still has all his hair. And more than likely we would not have this site, this testimony...
Much the same for myself, i have no idea if I have any high frequency loss, or how much if I do. Only getting measurments taken would ascertain that. However,...
That may be the case for some but I suspect it's more the case of how many DNA deletions there are & how severely we are affected. Most children seem to be...
HI BEV HERE; Thought I would update you on the results of my MRI: THE DOCTOR LOOKED VERY GRAVE. She said I have some good news and some bad news, then...
That's called selective hearing I think it comes with being a male lol! My husband has this all the time. He seems to go deaf when he watches TV! Rebecca is...
Dear Bev, What a terrible experience. I cannot give you any advice about your condition, but from your description of your meeting with your doctor, it sounds...
I have hearing loss. However, all five of my siblings and first cousins are non-FSHers and they all have hearing loss - so that would be familial, I believe, ...
Bev, My heart goes out to you! There are doctors out there that have the ability to communicate with patients. I would get copies of all my x-rays, MRI's and...
Bev, I am also sorry to hear the news you recieved was not good. Manny haspoitals have patient advocates for just this purpose. Additionally, many senior...
Hi Bev I need to know a few things in order to give you some suggestions I am located in USA, Where are you? What complaints did you tell your Md that she did...
HI BEV HERE: SHE WENT ON VACATION, SO I MUST WAIT ... From: xxr3378 <xxr3378@...> To: fshsociety@yahoogroups.com Sent: Tuesday, April 3, 2007 11:39:55...
HI BRYAN: THANKS FOR YOUR COMMENTS, I AM VERY CONCERNED, SHE IS ON VACATION., ... From: bryankop <bryankop@...> To: fshsociety@yahoogroups.com Sent:...
-Beverly You should be able to pick up the Radiology reports and the films from the facility you had these done in. But in the mean time I would make an...
I fell on Sunday and as we all know, when we go down we don't have the arm muscles to break the fall. At least I had the presence of mind to turn my head when...
Just come across this article. Among the patients treated with Bemithyl there were also FSHD-Patients called Dejerine. They improved siginficantly. ...
HI BEV HERE: I AM SO SORRY YOU FELL ! ! !Good Face save, I feel Like a gient redwood tree, onetime, however my knees hips took the most blow, because I was at...
`HI BEV HERE: THANK YOU FOR ALL YOUR SUGGESTIONS, I AGREE WITH ALL YOU SAY, I WILL BE TRYING TO CONTACT MY CENTER IN UC DAVIS, AND GET AN APPOINTMENT, I THINK...
silvertassel I currently see my MDA Neurologist evey 3months, my weakness is getting worse. She informed me that there will be a treatment for my FSH in the...
OMG, Bev, what a frightening experience to have gone through. You must be terrified. And you did it alone, too. You could have used someone to hold your...
