anyone with info on MS that could offer some advice?

[crow_noir]

One of my online friends (and in real life as we sort of live in the same city) has Multiple Sclerosis.

I've tried looking up info online and at the library, but for once there was sooooo much info and i felt so very overwhelmed. (That and my emotions get too worked up for me to be able to concentrate.)

The thing is that I've known her for years online and have met her in recent years. Just last year i found out she has MS, but she never really talked to me about it much. Well, lately she hadn't been returning my efforts to contact her. (For reasons i don't want to get into here i thought i had every right to be angry with her. It turns out i was in the wrong and i feel bad...) Turns out she was in bed for the past month. It made me so sad that she is this bad off.

I wish she'd talk to me about this so i understood more on what she is going through and what treatment options she's gone through.

Does anyone know of any treatments that has improved the quality of life for people they know with MS? Lifestyle changes? etc.

Please try and keep it in a simple format for me (normally i prefer the scientific approach, but my brain and heart just are not with it right now.)

I plan on emailing her a list of things to try... (I'm hoping she'll eventually feel comfortable enough to open up to me about this eventually.)

The email link in my profile should be working now. (just might take me a few days to reply.)

Thank you very much, in advance for ANY info you can provide.

[Maya & Inka's mommy]

My mom has MS ! I can tell you a lot about it; I will send you an e-mail later okay?

[Catty1]

http://mig.nationalmssociety.org/site/PageServer?pagename=MIG_homepage

This is the best place to search for support and resources.

Maybe ask your friend simply: "What do you need?"

For newly-diagnosed cases, there are some amazing medications. They don't cure (yet) but sure put a crimp in the illness. One young mom I know is on Avonex and doing great!

My sister was too far along for any of the drugs to be tried; she died last year age 48.

Acorda Therapeutics is doing tremendous research in spinal cord injuries and MS. They took over the testing of M1 monoclonal antibodies, which the Mayo Clinic found actually caused the regrowth of myelin in rats. (sorry, rat lovers... :( ) Also, there is a research link on the lower RHS of the link page.

Myelin is the nerve covering that is scarred "sclerosis" when the body's immune system attacks healthy tissue.

Your friend is likely really depressed right now...I hope her doctors are helping her get connected with treatment.

HUGS

[Catlady711]

One of my friends has MS. She says the medications are horribly expensive and her insurance just won't cover most of them. I don't know much about the disease itself since I never actually asked her details, but she says it does make her very tired frequently.

[Grace]

My dil was diagnosed about 13 years ago. She's one of the lucky ones - on no meds, and never has been. She uses a cane prn and, according to my son, should get more rest. But we thank God every day that she continues to have such an easy time of it.

It can vary so much from one person to another. Poor Annette Funicello has been bedridden for several years I believe.

[crow_noir]

I do know insurance has been a horrible issue she's been struggling with. and she is always sooooo tired every time i've seen her. I'm surprised she has accomplished as much as she has.


One of my friends has MS. She says the medications are horribly expensive and her insurance just won't cover most of them. I don't know much about the disease itself since I never actually asked her details, but she says it does make her very tired frequently.

[Catty1]

I would hope her doctors could intervene in the insurance area and have her meds covered by disability or something....I don't know how Michigan works in that respect....

{{{{hugs}}}}

[crow_noir]

I've tried offering her help several times. I know it is all i can do, that i can't force my hospitality on her because then i'd just be an invasive nuisance.

Avonex ... I'll suggest it to her.

*hugs* So sorry to hear about your sister.

One of my friend's most recent emails, she said to me that it is advance rapidly. :( Faster than anyone thought it would.

My friend is probably really depressed right now. Besides the issue of her health and the medications she also has two other big issues facing her. *sigh*

What scares me the most out of everything is i don't know how much anyone is trying to help her. I know she has a lot of people offering to help her with this and that doing stuff for her around the house and yard and running errands and such... but i don't know what anyone is doing for HER. In my own head i've labeled it as a "The Secret Garden" scenario. (Wither the exception that she is actually sick.)

repeating myself: and i just don't know where to begin with out knowing what's been tried. Metaphorically (and perhaps figuratively: ) I want to be the one who gets her out of bed and into the garden. ...if no one else is playing that roll. She has so much left to give to the world.


http://mig.nationalmssociety.org/site/PageServer?pagename=MIG_homepage

This is the best place to search for support and resources.

Maybe ask your friend simply: "What do you need?"

For newly-diagnosed cases, there are some amazing medications. They don't cure (yet) but sure put a crimp in the illness. One young mom I know is on Avonex and doing great!

My sister was too far along for any of the drugs to be tried; she died last year age 48.

Acorda Therapeutics is doing tremendous research in spinal cord injuries and MS. They took over the testing of M1 monoclonal antibodies, which the Mayo Clinic found actually caused the regrowth of myelin in rats. (sorry, rat lovers... :( ) Also, there is a research link on the lower RHS of the link page.

Myelin is the nerve covering that is scarred "sclerosis" when the body's immune system attacks healthy tissue.

Your friend is likely really depressed right now...I hope her doctors are helping her get connected with treatment.

HUGS

[crow_noir]

I just want to thank everyone that replies to this thread. Sorry if i don't give everyone an individual reply.

[Maya & Inka's mommy]

Oops, no time for an e-mail yet.. . Well, I might as well say what I know right here :D
My mom was diagnosed with MS, in 1968. She was happy because she finally knew what was wrong with her, and also because she could be treated from now on. But she was oh so wrong! They knew so little about that "new disease" then.... :( . And, they had no idea how to treat it :( . She was 43 years old then. We also realised she was sick for many years without knowing it. When I was 3, she saw me playing on the lawn, and then she saw two of me :eek: . She said she had such a bad balance for many years before that; so I know she had MS already when she gave birth to me. I have no idea if that is the reason why I have such a bad back... .
She got her first wheelchair in '68 then, but she could still walk with crutches till I was 20. On my wedding day, she sttod up from her chair for a picture. It is the last time I saw her on her feet.... :(