Multiple Sclerosis (MS) Support Group
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Hi, I went to a fantastic ms seminar yesterday!! It was a three hour drive, my daughters took me, they love those seminars. Of course I'm paying today from all that abuse,, LOL
Things I learnt:
Tysabri has the Touch Program.
They are researching a marker for the predisposition of the JC virus, great news, people will not disappointed by starting and having to stop medication.
There haven't been any reported cases of Hispanics with pml.
They had a neuro, female that spoke about sexual problems and ms:
Cymbalta will kill all possibility of sex ,so she doesn't recommend.
Viagra doesn't work , she has her patients on Cialis 20 mg + bimix ( I don't know what this is , it sounded like this)
She recommends a site called " disabilities r us" for purchasing aids for couples or solo playing. The site also has a chat.
To understand that a healthy relationship is not about penetration, but intimacy. Holding hands, kissing, dating, talking, caressing, etc.
They also had two ladies with ms, that are motivational speakers. They spoke about friends and ms, staying positive and using aids with pride,, yes I can. Even name your equipment if it makes you feel better. If you think your cane its ugly , give it an ugly name, funny,,funny name, etc.
I love seminars, it lets people know they are not alone. Even very sick patients attended. Young, old, thin, fat, wc, walkers, canes, we had a wonderful time, the bfast and lunch was great and plenty. I needed assistance when getting coffee, and another patient, came and did it for me,everyone is nice and trying to help the next. My daugthers couldn't help me because both of them have service dogs,,,so you can imagine,, the mob for info, they couldn't even get bfast for themselves. LOL.
Hope this is helpful to some here,
Love, Alma
Things I learnt:
Tysabri has the Touch Program.
They are researching a marker for the predisposition of the JC virus, great news, people will not disappointed by starting and having to stop medication.
There haven't been any reported cases of Hispanics with pml.
They had a neuro, female that spoke about sexual problems and ms:
Cymbalta will kill all possibility of sex ,so she doesn't recommend.
Viagra doesn't work , she has her patients on Cialis 20 mg + bimix ( I don't know what this is , it sounded like this)
She recommends a site called " disabilities r us" for purchasing aids for couples or solo playing. The site also has a chat.
To understand that a healthy relationship is not about penetration, but intimacy. Holding hands, kissing, dating, talking, caressing, etc.
They also had two ladies with ms, that are motivational speakers. They spoke about friends and ms, staying positive and using aids with pride,, yes I can. Even name your equipment if it makes you feel better. If you think your cane its ugly , give it an ugly name, funny,,funny name, etc.
I love seminars, it lets people know they are not alone. Even very sick patients attended. Young, old, thin, fat, wc, walkers, canes, we had a wonderful time, the bfast and lunch was great and plenty. I needed assistance when getting coffee, and another patient, came and did it for me,everyone is nice and trying to help the next. My daugthers couldn't help me because both of them have service dogs,,,so you can imagine,, the mob for info, they couldn't even get bfast for themselves. LOL.
Hope this is helpful to some here,
Love, Alma
I will be going to one in April. Cant wait. When I go I will update.
Thanks again.
She mentioned she gives the combination and have very happy patients, with little or no side effects. I've never heard of those meds. I'm divorced ,so never bothered to research subject. I'm glad to know there are options available for men.
I was dx last summer and I have been to five or six seminars already. Biogen- Idec is working very hard in raising awareness. At every seminar the number of participants is greater than the previous one. The word is spreading. MS is here, research is needed, gov funding is a must. Awareness will get us closer to a cure.
Alma
I saw a program on the anti-depressants that says that they don't really work as much as a placebo. The side effects are bad.
i just take anti-anxiety meds which work for me and don't affect the sex drive. I take buspirone and clonazepam. Helps with the effects from interferon. Really better than the anti-depressants. The side effects were too depressing to me!