| Thank you |  | ||
| Archive | |||
|
Posted by: Jean C. Phelps ® 12/14/2002, 12:13:29 Author Profile Mail author |
I want to thank everyone who responded to me privately or on the board, especially William who has had to read my long emails. I have, like many of you, have not had a easy time with getting a diagnosis or relieve from just knowing what this is and what is going on with me until this fall. After a long session and letters of complaint to Kaiser (I know Lynne M.) I finally did what many of suggested I do a year ago an switch doctors. My doctored said yes I would send you to a neurologist for the migraines, she said that was a way to get around the voice issue. She was very receptive read my information and so forth. My neurologist is recommending that I go to NIH, to either participate or have Dr. Ludlow listen and look at my situation. So we will see. On another emotional level, thank you all and my husband and son, mostly my cats, for keeping me sane. I run my own needlework business, so if the one side of brain isn't working then other is to let me be alittle more creative. But the toll this has taken on our personal lives is not fair. Alot of friends, do not associate with us any more, because they got tire of asking to resturants and we would decline, because of the noise. Also, they don't understand even after reading the information why this can't me fixed with muscle relaxers, they have made cutting remarks at me, and so forth. I just would like to know if any one else has experienced this.
Jean C. Phelps
|
| | Recommend | Alert | Previous | Next | Current page |
| Replies to this message |
| Re: Thank you | | ||
| Re: Thank you -- Jean C. Phelps | Top of Thread | Archive | |
|
Posted by: Lib Haywood ® 12/14/2002, 14:04:18 Author Profile Mail author |
Jean, I joined a research unit at NIH in 1989. They were experiencing at the time with different amounts of BoTox injected into the vocal cords, trying to arrive at a recommended amount. You could stay in the research program for two years. During that time they gave me injections of various amounts and received feedback from me. They started with 5 units in each cord. One of the injections was 20 units in one cord. I think from this research they eventually came up with a recommended amount of 2.5 units. Dr. Ludlow was in charge of the research then. She is a very caring and personable person. The NIH operation is very well organized and seems to run very smoothly. They paid for my air fare and my hotel if I had to stay over. Several years after my two year period was finished, they called me back to check my vocal cords. At that time they were trying to determine what changes had occurred after many injections.
|
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | Next | Current page |
| Re: Thank you | | ||
| Re: Re: Thank you -- Lib Haywood | Top of Thread | Archive | |
|
Posted by: Jean C. Phelps ® 12/14/2002, 22:17:51 Author Profile Mail author |
Lib, I am going to go ahead an keep the appointment, which is to see if I can be accepted into the study. However, I am little skeptical whether or not they will use me since I have so many other factors, in my own health care managemet, mainly an immune system that doesn't work. From what I understand from my neurologist, who confirmed that I have AB/sd, he would also like to thave Dr. Ludlow evaluate the deterioration of my voice to almost nothing and take in all the other things that have come about over the past year. What he can't determine if if the neuralgia pain and is mtd or not related at all, as well as the migraines which he is treating me for. I appreciate you giving me the time frames of how things work.. I will have my husband drive me up since it is two hours away and he has set the 20 minute rule on me, due to my voice. I can only go on trips that are 20 minutes by myself. Also due the medication for the migraines I get a little loopy. After I go I will post any findings and how it went on Tuesday. Jean C. Phelps
|
| | Recommend | Alert | Where am I? Original Message Top of Thread | Previous | | Current page |