Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Greeting Jeanie! You noted: > Needless to say, we are devistated at the potential > diagnosis, but there seems to be a little more hope > in the prognosis from your experiences than the > medical books. ... Jeanie, first welcome to the group! I certainly understand how you and your husband feel. I am 44 yrs old, with two children (11 and 16 yrs old) as well. Believe it or not, this diagnosis can actually be a blessing! Sure we hate the impact to the quality of life. But it enhances our awareness of life itself. I attempt to make everyday count. I try to spend good time with my kids. We talk about their dreams and how even something like MSA does not need to be a barrier to using our gifts to help others. And in an amazingly difficult manner, it teaches me that I am NOT in control. Whether I want to or not, I become dependant upon others. For example, I can no longer drive at night ... and probably won't be able to drive any longer after January. Or I need someone to help me get up off the ground, due to poor balance. Or... Well, you get the idea. You are right " We don't know what the future holds " . But the good news is that you can adjust to change. Last year we went to the mountains (to pick up a Christmas Tree). I was desperately clutching my walking staff because of the dizziness. Well, I still have balance problems. If anything, my balance is worse. But I adjusted and accepted change. I still use that walking staff. But it isn't as overwhelming now. I hope you and your husband also find that level of acceptance. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Dear , What an inspiring letter. As my friend told me when Ed was first diagnosed and I was a complete basket case, " at least you can prepare yourself and live each day to it's fullest. No on knows when it will be their last day on this earth. We could be killed in an accident, but at least our family has time to get all of our finances, travels, etc..in order. " So I see what you mean and I'm sure Ed is thinking down those lines. He has always taken care of us and finances, but now I have time to aquaint myself with these matters. Thank you for your response. Everything written here has really helped me in one way or another. What a great site. Jeanie > >Reply-To: shydrageregroups >To: <shydrageregroups> >Subject: Re: Re: New member >Date: Tue, 19 Dec 2000 12:01:18 -0500 > >Greeting Jeanie! > >You noted: > > > Needless to say, we are devistated at the potential > > diagnosis, but there seems to be a little more hope > > in the prognosis from your experiences than the > > medical books. ... > >Jeanie, first welcome to the group! I certainly understand how you and >your >husband feel. I am 44 yrs old, with two children (11 and 16 yrs old) as >well. > >Believe it or not, this diagnosis can actually be a blessing! Sure we hate >the impact to the quality of life. But it enhances our awareness of life >itself. I attempt to make everyday count. I try to spend good time with >my >kids. We talk about their dreams and how even something like MSA does not >need to be a barrier to using our gifts to help others. > >And in an amazingly difficult manner, it teaches me that I am NOT in >control. Whether I want to or not, I become dependant upon others. For >example, I can no longer drive at night ... and probably won't be able to >drive any longer after January. Or I need someone to help me get up off >the >ground, due to poor balance. Or... Well, you get the idea. > >You are right " We don't know what the future holds " . But the good news is >that you can adjust to change. Last year we went to the mountains (to pick >up a Christmas Tree). I was desperately clutching my walking staff because >of the dizziness. Well, I still have balance problems. If anything, my >balance is worse. But I adjusted and accepted change. I still use that >walking staff. But it isn't as overwhelming now. I hope you and your >husband also find that level of acceptance. > > >Regards, >=jbf= > > B. Fisher > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 Jeanie, Rob had symptoms for at least 5 years, maybe longer, before he was diagnosed. He started with a sleep disorder (he's had obstructive sleep apnea for as long as I've known him, so I don't even count that!)called a REM behavior disorder, which causes violent dreams that are acted out, with lots of talking, thrashing around and in his case, even sleep walking. He takes klonopin for that, which really helps. The rest of the symptoms crept up over a period of time. His voice got very soft, and his handwriting, which has always been bad (lefty!) got very small and almost impossible to read. He complained about constipation and frequent urination, which we figured were age and diet related. He started to experience erectile dysfunction, which we also thought was age related. It wasn't until he started fainting, about 3 years ago, that we became really concerned. We saw the neurologist he had been seeing for his sleep problem, who put all the pieces together and made the diagnosis. Rob's problems are mostly autonomic (Shy-Drager type of MSA). He taked lots of meds; in addition to the klonopin for sleep, he taked flourinef, proamatine and buffered salt tablets for low blood pressure, sinamet and amantadine for movement problems and muscle cramping, detrol for bladder control, miralax and surfak for constipation. With all of this he is mobile and even though he tires easily we are able to do most of what we want to do (travel, go to the symphony and the theater) as long as we pace ourselves. He has not has any hearing problems, but he has had some trouble with indigesgtion. Lots of people on this list have GERD, and many take medication for it. Hang in there. This disease it yucky, but it can be managed. Get the best care you can - it may make sense to travel to Vanderbilt, at least for a consult. Most of all, don't give up hope. Carol & Rob > > > Hello everyone, > > > > > > I have been reluctant to write since we don't have a final > >diagnosis, but > > > the information has been very helpful to me. My husband was > >diagnosed with > > > cerebellar atrophy 4 months ago. Now his physician thinks he has > >MSA. We > > > will be going to Univ. of MI in Feb. to participate in a sleep > >study with > > > Dr. Gillian. Needless to say, we are devistated at the potential > >diagnosis, > > > but there seems to be a little more hope in the prognosis from your > > > experiences than the medical books. My husband is 53 yrs old, a > >physician, > > > and I am a nurse. We have 2 children 6 yrs and 12 yrs old. Just > >wanted to > > > make contact and have some support. We don't know what the future > >holds. > > > > > > Thank you, > > > > > > Jeanie > > > > > > > > > >From: " Pam Bower " <pbower@i...> > > > >Reply-To: shydrageregroups > > > >To: " sds " <shydrageregroups> > > > >Subject: Lonely in the chat room > > > >Date: Sun, 17 Dec 2000 16:17:01 -0400 > > > > > > > >Anyone out there? > > > > > > > > Reminder: Chat Time Today > > > > > > > > > > > > > > Since winter is upon us and people have expressed interest > >lately in > > > > > > chatting we should set up some regular times where we can > >meet in the > > > >chat > > > > > > rooms. Sundays seemed to be a good day before. Since we > >have some > > > >people > > > > > > in the UK why don't we try an earlier time so they can join > >in. I'll > > > > > > suggest Sundays at 3PM eastern time which would be 8PM I > >think in the > > > >UK. > > > > > > We can add more chat times later as need be or people can > >just drop in > > > >the > > > > > > chatroom at any time on the chance others will be there. > > > > > > > > > > > > The preferred chat room from past experience seems to be the > >one where > > > >we > > > > > > use all use Netscape Instant Messenger. > > > > > > You can download the software from here if you don't already > >have it: > > > > > > http://www.aol.com/aim/ Click on " Get it Now " > > > > > > > > > > > > We have a chat room set up which you can access by going to > >my > > > >website: > > > > > > > > > > > > http://home.inforamp.net/~pbower/msachat.htm > > > > > > > > > > > > Click on " Join my chatroom " to enter. > > > > > > > > > > > > See you there at 3PM Eastern time today. > > > > > > > > > > > > Love, > > > > > > Pam > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2000 Report Share Posted December 24, 2000 hi jeanie I`m a new member also. My husband has had balance problems for two years. We`ve seen many doc including 4 neurologists..He doesn`t have a definite diagnosis yet. Possible MSA. Definately a celebelium disorder, with OH. We went to a movement disorder Neurologist on Fri. He`s scheduling another test. This is new and experimental. They inject die into the brain to see it`s path to see if he has MSA. From this test he says they can tell. If it`s negative it doesn`t mean he doesn`t have it, but if it`s possitive he does. I`m not even sure why he`s doing it since he said my husband does not seem to have the MSA that is similar in symptoms to PD. By the way my husband is 56. We have 2 kids, one still in high school Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2000 Report Share Posted December 28, 2000 Barbara: Welcome to the group. I'm sorry that I can't help you with the drugs that you're taking. I've never taken either of them. Maybe someone else can help. I have met one person who recovered and I've met lots of people who have not. I think that is about the way things are....some people recover and lots don't. I must say that I'm better than I was when I first got sick 10 years ago, but I'm still far from well. I hope that you are one of the few. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 In a message dated 2/24/2001 10:37:33 PM Pacific Standard Time, khaismem@... writes: > It was still puzzling to the doctors because > along with the rash, my symptoms were sore and achy body, running > Hi Laurie, Welcome to the group. My name is and I'm 23. I've had Fibro since I was fifteen and I'm now getting rheumatoid arthritis in my hands. I wanted to say hello to you because I get the same Fibromyalgia symptoms. I get a weird rash everywhere except my face and hands. It goes along with severe muscle and joint pain, a fever, and a sore throat. The pain is so bad I can't stand up by myself. It's like my whole immune system just breaks down.The rash starts before the other sypmtoms do so at least I know whats coming. I usually don't eat for about a day and a half because I just can't force myself to. This happens to me about two or three times a year. My doctor keeps telling me these symptoms have nothing to do with Fibro, but I've talked to other people who have severe FM and they have the same problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 Welcome to ALL new MEMBERS.... , have you tried Vit B1/B6/B12 (combined) into 1 shot for your severe stiffness? I swear by the shot now. I used to be almost doubled over every morning from the stiffness, which would take a good 2hrs to unbend.... and now I have minimal stiffness unless it gets really cold quickly then I have more stiffness. I tried to go 3 weeks without a shot.... I went back begging my Dr to shoot me... LOL A little humor for this Sunday If you decide to try the shot vote to get it in the hip about 3 " from the trigger point. In the hip you don't hardly feel it. In the arm it hurts a lot but I guess the tissue in the arm is denser or something. Good Luck and HAVE A PAINFREE AS POSSIBLE SUNDAY EVERYONE! Angel Hugs+Love aka Spark Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2001 Report Share Posted February 25, 2001 In a message dated 2/25/2001 11:26:48 AM Pacific Standard Time, SparklH2O@... writes: > , have you tried Vit B1/B6/B12 (combined) into 1 shot for your severe > stiffness? I swear by the shot now. Hi, Honestly, I'm terrified of having shots. I haven't ANY since I was 10 months old. I had a reaction to a polio vaccine and so my mom wouldn't let me have anymore. How much do they hurt compared to having your blood taken? I have my blood taken out of my hand because they can't get to the vain in my arm no matter how relaxed I am. I'm a wimp Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2001 Report Share Posted May 11, 2001 > ,,,,,golly, gosh darn, don't know if I welcomed you or not,,,gee! > So if I didn't I do now and if I did, it can't hurt to be welcomed > twice......whewwww!!!! LOL. This is a nice place to come and talk about > our lives. The people here are a good bunch as you have already seen. > I am a little older than you, 53 actually, and I can't believe I am that > old !!!! Where did the years go? And I have a birthday next month this >Dear Jan M, Thanks, each day brings more welcomes. You guys are great. We'll talk some more. Love to ya, time, yikes!!!!!! So welcome. Jan M Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 Hi , welcome to the group... You don't have to have Neurosarcoidosis to join the group you are welcome to be a part.... feel free to ask questions, or join in on converstations.... Let us know what you would like to know... or just be a part of a loving supportive family..... Again come on in and make your self at home...Tell us if you need anything.... Big Hug, -- new member Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 13, 2003 Report Share Posted August 13, 2003 welcome !....I was diagnosed with systemic sarcoidosis last April and neurosarcoidosis last month. This is a wonderful and supportive group. Sincerely, Stacie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2003 Report Share Posted August 14, 2003 Welcome , You have found information and most of all support in this wonderful group! Nimeth wrote: Hello to all. i am new to this group however not new to sarcoidosis. I was diagnosed in 1998. At that time it was in my liver and spleen. Now it is in my lungs and kidneys also. I do not have neurosarcoid, but was still interested in joining this group for all the information I could find. Thank you. ~~~~ *** ~~~ *** ~~~ *** ~~~~ The Neurosarcoidosis Community Live Group Chat:- Mondays & Fridays 10pm EST USA http://www.elderwyn.com/neurosarcoidosis/chat.php Message Archives and Digest Attachment Pictures:- http://groups.yahoo.com/group/Neurosarcoidosis/messages Members Database:- Listings of locations, phone numbers, and instant messengers. http://groups.yahoo.com/group/Neurosarcoidosis/database Bookmarks:- Add a website URL you have found useful. http://groups.yahoo.com/group/Neurosarcoidosis/links Personal Complaints or problems:- Please email the moderators mailto:Neurosarcoidosis-owner Subscription Details:- 1) Individual email - means that every email sent to the list you receive. 2) Daily Digest - sends you 25 messages in one single email for you to browse. This is an excellent option if you receive alot of email. 3) Web only/No mail - means that you can pop into eGroups at your convenience and receive no email. To modify your subscription settings please visit:- http://groups.yahoo.com/group/Neurosarcoidosis/join To subscribe email neurosarcoidosis-subscribe To unsubscribe email neurosarcoidosis-unsubscribe The moderators will not be doing it for you! ~~~~ *** ~~~ *** ~~~ *** ~~~~ Come stand by my side where I am going, Take my hand if I should stumble and fall, It's the strength and love that you share, That gives me what I need most of all. - Hoyt Axton ~~~~ *** ~~~ *** ~~~ *** ~~~~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2006 Report Share Posted March 21, 2006 I am new to this group, but have studied mercury a bit. I have finally made the decision to get my amalgam fillings removed. I have been advised that the best person for the job is in Tiajuana, but I feel I am in good hands because the dentist I'm going to actually knows this expert (and taught me a bit about Hal Huggins, if I have the name correct). It seems he is using a good procedure whereupon each tooth is walled- off (i.e., vs. a rubber dam since material can actually get passed it, in his opinion), and he also has a ventilation system which changes the air within minutes - - along with equipment which tests the level of mercury in the room. I have eight fillings, most of them small. The largest he tested, and it had a " moderate " amount of vapor. I have had lifelong depression since I was a child, quite possibly after these fillings were put in. Does anyone have an opinion or story regarding amalgam removal and depression? In any event, since the removal will be in steps, I have fingers crossed that I won't have many symptoms of illness. What I want to know, if someone would be so kind to advise me, is what supplements are best recommended for mercury removal? I recently took some selenium in relation to a thyroid issue, and I had the worst metal taste when I coughed. I actually thought it was blood, but a chest x-ray was normal. When I discontinued the selenium, the metal taste went away. I subsequently realized it may have been due to some sort of mercury removal. Does that sound valid? This dentist does offer supplements, so I want to know what to look for. Any other information or advice, as well, would be appreciated. Lots of questions for one post, but thanks in advance. All the best, Diane Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.