Multiple Sclerosis

[livingwith]

I was diagnosed with MS in August 1999 when I woke up to a paralized right leg. I have since learned to deal with the symptoms though not always easy. I found that your outlook on life has alot to do with your quality of life when dealing with a chronic illness.

I also have my faith which is why I am so optimistic. I am now 35 years old and fixing to start a new treatment for MS I was on another medication for about 8 years and it adventually did not help anymore. I have heard lots of wonderf...Read the full article

[Jay's gran]

I was incorrectly dx with Myasthenia Gravis in 1988 when I was 23. The treatment at the time was to remove the thymus gland which is under the sternum. I did not realize that my chest would be cracked open and wired back together. Then nearly 10 years exactly, I was dx with MS. Maybe ingnorance is bliss because for 10 years I thought I was doing great. I am still a little bitter about the scar on my chest, but as everyone says "it could be worse". And they are right. When I was dx in 1998 I was working for an oncologist. I saw people every day that would trade places with me in a heartbeat. This helped me more than anything. Don't get me wrong - MS SUCKS. I seen that on a T-shirt on ebay and I just think that it is appropriate. I am not whining, I am just stating a fact. No one understands because you don't look sick. Again I am not whining, I am just stating a fact. There's really no other way to say it except - MS SUCKS.

Now I am a firm believer that you should learn to laugh and bitch and laugh and bitch about all of it. It's your body. You have the right to do the above.

I have started coughing or laughting so hard that I wet my pants at work.

I cannot remember what I did yesterday, but I remember being 3 years old and getting my first kitten.

I have to carry a purse the size of the Titanic because I am to will have an anxiety attack if I don't have ALL of my meds with me. Especially the anti-anxiety medication.

My 3 year old grandson is already finishing my sentences. He is too cute and alot of times, the reason I get up out of bed.

I have been called lazy by my husband, so I moved out. (We're still working on things) I rent an apartment with a friend of mine and sometimes I stay in bed all weekend long and only get up to do my ONE load of laundy of my work clothes.

I am not a knowledgable political person, but none of my family is even interested enough to see what Mitt Romney's campaign is about. He's married to someone who has MS. My sisters and brother are related to someone who has MS. Can you spare me an hour or so just to check it out??? (Or, lie to me and then vote for whomever you wish anyway.)

I love shoes and books. These are my too guilty pleasures. And I still wear my high heels and if I stumble just a bit, I just ask "Who put that wall there?"

Bottom line, I know it could be worse, and right now it is getting worse. I help fundraise for Breast Cancer, Heart disease, Premature babies, etc even when I don't know anybody personally that is going through any of the above. However, other than family members, very few will show up at our MS Walk. Everyone has their cross to bear and this is ours and it SUCKS. But regardless, the sun will be up tomorrow and whether you spend it laying in bed reading a book or up doing some light housework, the alternative is worse. Just live and don't be afraid to be pissed of sometimes. Talk to me when you are pissed. After nearly 20 years with this disease, I'll be glad to listen. Sorry so long...

[isabellebichone]

Thanks for being so honest. I was wondering if you could read a note I posted on the peer to peer forum. It was a long note, sorry, but that's how it goes... (one error, I've been in PT for a month and a half, not two and a half.)

When I started PT my therapist said he didn't see any fibromyalgia (trigger points, whatever). Over half of the doctors I've seen have questioned that dx, so I thought, great, I'm going to go through PT and get better. Well, guess what? Something else is wrong, and we still don't know what it is. I strongly suspect MS, but thought I could put that idea away last year after my MRI came out normal.

You seem to have a good handle on the MS issues and how to deal with the reality of it.

I'm afraid I'll go overboard with all of my details, and wonder what it is I should be sure to talk to my neurologist about when I go see him in February.

Any input will be appreciated.

Good luck with your journey. I admire you for still wearing heels. (I'd try it too, but my back will retaliate! I also hate it when I fall in public places. I know people think I'm drunk sometimes, but then again, who cares what people think?)

Thanks-