Since the remodeling is still going on in the house and I haven't been
feeling well for a couple of months I haven't been posting.
I have been reading some posts when I feel up to it.

I went to the new Neuro today to get the results of the vision test
and the latest MRI. News was not to good.

My last MRI was in 2007 of Oct. This mri shows more lesions have
appeared and some are lit up like a christmas tree.

I have been having problems. Symptoms all getting worse. I know I
don't have to repeat to you the symptoms ms can cause from head to toe.

He wants to put me on Rebiff. In the 25 yrs. since I was dx I have never
been on any of the drugs. Refused to take them. Now I just don't know
what to do. Part of me is saying do it and the other side NO

How many of you are on Rebiff or have been on it? I also don't like the
idea of the side effects and giving myself a needle.
I feel bad enough, why do I want to make myself feel worst. I don't know
what to say. My mind is just going around in circles hearing that things
are not that good.

Have been under a lot of stress since my move from NJ to Kentucky.
Fixing the house the way I want it to be and still things are not finished
I am told that it should be done in two weeks. The bad weather this winter
caused a lot of the delays.

I asked about LDN. I thought he was going to fly out of his chair.
"Absolutely NO" As you know some drs. won't acknowledge that it does help
but being a drug that has not been proven under their quide lines
"It is not good"

Thanks for letting me blast out. I am just going to have to reach deep
down in my soul to see what I decide to do. Also know I will get a lot of
help from you guys.

Jappy

I don't know how much help I could be, but I do have fat...er, I mean, broad shoulders, if you need one to cry on.

One thing I can relate to is the needle thing. I was the needle weenie poster child. I thought, never in a million years. Guess what? Three years of DAILY shots later, I can't believe that was such an issue.

Praying for you.

Sorry, Jappy

I am at 23 years dx'd and have never used the the drugs and have declined when asked. My neuro and I have had many discussions over the years on this topic.

I don't like to say I will never use them since things can and do change. However, it will take an awful lot to change my mind at this point.

Since your MRI is lit up and your symptoms are getting worse I am assuming your having an exacerbation, has steroids been mentioned? Is that an option for you?

Best wishes with the rebif

Hi Snoopy, no steriods were not mentioned this time.
Besides not liking needles it is also the side effects that have me
bumd out.
You feel sick, why feel sicker. Also no guarantee it will help

Thanks for your reply.

Jappy

Stress can cause all kinds of ugly sx to surface. Just my opinion, but I would try a round of steroids before I made up my mind to do any of the DMD's.....especially if you've gone this long without them.

I love it when doctors are so adamant about not prescribing certain meds that they've never tried yet so adamant about suggesting others that they've never tried. It's your decision. You've been without them for 25 years.......there's no rush to decide now. My own Neuro won't even discuss LDN so I got it on my own.

I hope your stress level decreases now that things are beginning to settle down there. Moving is one of the most stressful things you can do.....so give yourself a chance to adapt and ease into your new surroundings. Too much change in a short amount of time is upsetting for anyone.

Hope you feel better soon.

Grrr. Why are doctors so quick to prescribe a lot of drugs 'off label', but when it comes to one like LDN, they reach for the big red panic button?

I really hope you begin to feel better Jappy. Big 's! I know you'll make the decision that's best for you.

That is part of why I don't use a DMD. If I am feeling good why complicate those times with side affects and if I feel crappy why make it worse with side affects. And, no guarantees the DMD will make a different.

At this point I am more concerned with a DMD causing more problems than it would solve.

This is just my personal opinion about DMDs and my MS.

Personal choices, personal decisions, for a disease that is unpredictable.

I'll have to think about it, Joyce. but my gut reaction is...NOOOOOO, don't start the DMDs now, after all this time. Get LDN, on your own and try it first.

Wishing you the best, always..

I have nothing but hugs for you, Joyce!


Deciding to start a drug is a hard choice. In your case, even harder since you haven't done any of them so far.

Whatever you choose, I wish you the very best and hope you FEEL better soon and that your house gets done on schedule! That's only adding to the stress you have had in your life this past year!

We miss you!!!