Hello, I'm sorry you're struggling internally with all of this. If you were dx why would your family insist you need more confirmation? Many times you can have MS and your LP will be negative- mine was negative when trying to get Dx.
Are you currently taking any MS meds? I did not gain weight on Copaxone. However, I gained a lot of weight from depression, having to take lots of Prednisone, and staying at home...

Your health is most important- and you Must eat healthy to take care of yourself b/c nutrition is so important and not eating or eating right will make your MS seriously bad- more distruction to your nerves..
Please inbox me any time you want to chat... I have many tips on eating disorders and MS ... I hope you have a wonderful day...

Sounds like you're saying your family does not agree with the diagnosis. Is that right?

I don't believe that being conservative about treatment is going to hurt you. I don't take anything for my MS except for vitamins and natural supplements. Diet is a huge issue for anyone with an immune disorder. When I tweaked my own diet a few years back, it made a night and day difference in my energy and feeling of well being. It is crucial that you eat healthy.

The MS drugs don't cause any weight gain. Steroids are another issue and I would stay as far away from them as you can.

Hope this helps.

Hi

I'm on avonex, my daughter on extavia and neither one of us has gained weight, as lorrie said, steroids will. once you are dx a lp won't make a difference plus you might get bad headaches from it. Both of us were dx without it. Maybe your parents are in denial, as a mother, I know, hearing my daughter has ms was the hardest thing that has happened to me.

keep us posted, alma

When I was first dx'd in 1995 I did not care to go on the beta seron (needle phobia one concern and killing one's immune system another big concern THANK GOD FOR THAT!).

Anyway, both of my parents were still alive at that time and my mother (who I found out AFTER she passed also had MS but did not tell me of her very recent DX at the age of 75 years -- can you believe this?).

My father was totally freaked out and saddened by the DX and he died not long after this happened due to a massive stroke. :( :( :( I loved him so very much but that is a whole other story.

As for my mother, she was 1/2 Indian and she didn't believe much in the White Man's medicines. So, she did not think it was a good idea and I agreed w/her about this.

So, I never went on any of these injectable medications and was assured that "a cure was right around the corner". Yeah right.

Well here I am some 17+ years later and I have never messed with the MS drugs that are oh so heavily pushed by these two-bit doctors where I now live.

As for steroids, my late mother did loads of them over the course of her life. They did give her some temporary relief, but not a cure by a long shot. She gained a lot of weight from the prednisone she often took and was well over 200+ lbs. a few years before she passed.

I've never been a tiny woman myself but today I weigh about what I weighed when I got out of high school.

Weight is the very least of my concerns as I went through periods where I could not taste food, I was too tired to eat, too depressed to eat, etc.

You should eat well and try to avoid junk food and eat only foods that are good for you if possible

I never had a spinal tap and wouldn't have let anyone (esp. where I live --- OMG what idiots around her -- don't even know how to use a bedpan if you can believe that one -- another story there again). I was DX'd quickly via and MRI scan of the brain showing lesions.

I went through a period where I was blind in one eye and could barely walk. Legs felt like they weighed 200 lbs. each. It was awful and I was plain SICK.

I got a lot sicker when my Dad was dying and at that time I had to give it up and file for SSDI. I'd worked full-time jobs since the age of 19 years and had just received my M.A. degree the abt. 7 mos. before the DX.

Talk about depressed, sad, suicidal, hating/cursing GOD, you got me there.

As for your parents maybe they want to BE SURE YOU HAVE THIS CRAP before you take these drugs? That is what I think anyway.

As for your issues with weight, try to watch your diet and also, try to stay as active as you can (I should listen to my own advice here as I spend far to much time becoming one with the bed/sofa).

These are my thoughts and I wish you well and hang-in there and now that you have friends here on Daily Strength! :)

I am sorry that you have received this diagnosis. My guess is that your parents and family are in denial, hoping the LP will come back negative, but that still doesn't take away what you have been diagnosed with. MS is truly not the death sentence that it used to be. As you have read, everyone with MS has a different story of what works for them. Some go the natural route like Lorrie, and others choose meds like Alma and myself. I am on Rebif and have been for 16 months now. The best advice I can give is to find a doctor that will work WITH you on how you wish to proceed. Tell him your concerns about gaining weight. I don't thing the meds (except the steroids) cause weight gain, but the depression sure can take a toll. Keep us updated as we really do care about you and hope you can find the right treatment plan for you.

Hope4acure - WOW!!!! Cannoth believe your mom had MS and you didn't learn about it until after she had passed. I am sorry to hear of that. You have done a great job battling this disease for 17 years!!

I am so sorry that you are struggling with an eating disorder. I do not believe that the MS therapy drugs (any of the CRAB drugs) cause you to gain weight in any way. Please don't let weight worries stop you from taking any drug.

The steroids can make some people gain weight but I have known people who have used steroids regularly because they couldn't take therapy drugs and they didn't gain any weight so it depends on your body or your tendency. I hate steroids so I wouldn't go on them anyway and I believe they are bad for your bones.

I agree with Lorrie that diet makes all the difference in the world. If you leave sugar out of your diet, it is really good for your MS and helps you a lot. It would also help in any worry about weight gain. I understand your worries about weight gain, but the regular drugs do not cause you to gain weight. Call your pharmacist and ask them to get verification on this.

I think that the therapy drugs can help some people. But it up to you to do what you think is right but please talk to your doctor before you make any decision about therapy drugs.

thank you soo much everyone!! i really appreciate the comments and yeah my family doesnt believe i have ms cuz "no one in the family does" etc and so they are just like u need more test a doc cant just listen to ur symptoms and look at pics of ur brain and dx u...


im working with a therapist now on my ed depression anxiety etc and i told her about this ms thing im dealing with at the moment

I am the only one in my family with MS too so don't let your mother's denial convince you over the doctor. Listen to your body and your doctor. My MRIs matched the textbook case of MS so there was no denying it for me. Also, when I got a library book out, I could identify with a lot.

Best of luck to you.