Re: medications for MSA(Calgary)

[Guest guest]

Hi,

My name is Bonnie and I read all the letters. But 's letter really hit right home. I too go from one doctor to the next.I live in Calgary,Alberta,Canada. I've tried do many drugs that it is only wasting money to me. I have full drugs paid for insurance. So it is not my money. I take demerol shots when the pain is out of control. I have dystonia down my back muscles and parkinson/tremors. I know what you mean when your family do not under stand your pain, they cannot relate due to the fact they have no knowledge at all. All the books and brochures that I leave out for them to read they don't. I think they are scarred too.Or just don't want to face the reality of it. No one likes to see a loved one in pain but in our case they seem to try to avoid it as if this is not happening. I don't have all the answers but I do know they are not blind when they see us in pain. Just maybe one day our families will try to be more informed.

When you mention your grandchildren and how much joy they give you, I understand. I'm 46 and a first time grandma and my granddaughter is 9 months and she makes me laugh all the time. I forgot how great babies were, my three girls are grown and on there own, except one 16 year old who knows it all. haha TEENAGERS you know!!But like you said the grandchildren give you such joy. I live for my granddaughter and see her regular, she lives only 5 minutes away. I could walk there but I have trouble walking due to my knees.

It does feel good to write your feelings down and knowing that the group do understand when our families don't.It is one day at a time, with good days and bad, the up and down. It like a yoyo never knowing when it is going to work for you.

, thank you , for your sincere letter to the group and hope you find relief for your pain .

So I do read the letters but I wrote today. I guess you would class me me as a new writer.

Thanks and hang in there.

Bonnie

bonniecurlew@...

>From: "dizzydancer52"

>Reply-To: shydrager >To: shydrager >Subject: Re: medications for MSA >Date: Sat, 29 Dec 2001 12:30:53 -0000 > >, thanks so much for the email, > I understand that there is no definite test for MSA which makes >it all so hard to figure out. All I have definitely heard from all 3 >neuros is dystonia which through my research is on the MSA list as >well as autonmic problems. You all have been SO great here for me you >just don't know!!! I am like you I hate to keep having tests and >tests and shows nothing really pertinent. I saw my opthamoligist >years ago and he could see the nystagmus and he told me I need to go >to a neuro. My PCP didn't listen to me at all probably because of my >HMO, needless to say I have a new PCP and not on an HMO. I am also on >SSD. I still work 2 days a week for distraction as Aletta said, and >it does help. Also my Rx plan with Target is GREAT, so that too gives >me momentum to stay. Plus I get positive strokes at work, I am one of >the switchboard operators and they call me "Queen of the operators" >for the way I can handle calls to help the people on the floor. I >feel alot of my problems are NOT screaming enough about my condition, >BUT last visit to neuro he said, "how are you today'? when he came >in, "I said fine", then started crying and said, "NO, I am not fine I >am in MUCH pain". He sat down and went through ALL my charts and test >and really listened and looked deeply. It was this time he said >something else IS going on with me and he wishes to send me to >someone else. I am not at the place to do something to myself and if >I should ever get there I would go for help!! My greatest joys right >now are, a beautiful 2 yo grandaughter and a 4 mo old grandson by my >daughter, and they only live 1 mile from me and I know not everyone >is that lucky. They bring me great joy and happiness. I can't carry >them as I have fallen 19 times now but she is starting to understand >that. I am fortunate to have found a neuro that is willing to send me >on if he cannot figure it out as he is the 3rd one to tell me they >are baffled but 2nd one didn't want to let me go but I went!! My >biggest hopes were that there are still meds I've never tried that >might be able to help me. So please remember me in your prayers! >Sweet Anne also told me to keep pushing and I will, but the problem >with that is my family and friends don't believe how much pain I've >been in when I keep going, but I refuse to quit. I am 52 and like I >said I've have pain for 8 yrs. I am VERY anxious to get some >relief!!! I need all of you guys on here, it helps so much to be able >to talk with other with similiar problems. I don't care what my >diagnosis is, just get me some relief from the pain. Sorry this >is a long one again but, many thanks to you!! >Hugs, Valarie > > > >If you do not wish to belong to shydrager, you may >unsubscribe by sending a blank email to > >shydrager-unsubscribe > > > > >