My PPMS - Checking back 3 yrs. later.

[dm123]

Just because no one has gone to the expense of testing a drug and paying the expense of pushing it through the FDA for PPMS doesn't necessarily mean it has no effect. If enough anecdotal information is present, it does mean something but may or may not be the truth.

Getting any med FDA approved is expensive. Usually, this is done by a pharmaceutical company. Unless there are enough patients out there, they are not likely to spend what it takes on trials.

There are orphan drugs for some diseases. In 1983, the Orphan Drug Act was passed to give extra incentive to drug companies for diseases with <200,000 patients nationally. If PPMS could get this designation, it could provide extra incentive to develop a treatment. If MS docs are using the current approved drugs off label and getting results, it would make it harder to get a drug company to do R&D. So many, and I feel I am one, fall into the RRMS diagnosis instead of PPMS because of insurance.

I think I would fuss if a doc tried to change my diagnosis. It would be hard to change it back. I'm not sure about MS but Medicare will not pay for off label use of cancer drugs, or at least that is what I have been told. It is hard enough to get insurance companies to pay for MS drugs without giving them a reason to deny coverage.

[Des]

My neuro wouldn't prescribe Ampyra for me because it lists seizures as a side effect.

It's funny, in a weird sort of way, he didn't believe me when I said I took Phenobarbital for seizures. He said seizures were rare in MS. He wanted me to stop taking it, and I said no, I was afraid to stop it.

Anyway, he sent me for a cat scan, and it showed "peaks and valleys" which meant I did have seizures. He told me that, and I said I already knew that. I take Phenobarb because I've tried other meds for seizures, which I had side effects from.

Since then, he's stopped telling me to stop Phenobarb, and believes I really do have seizures.

[Windwalker]

I was 47ish when I was first seen by neuro. I have never had an episode of anything. I've never relapsed. I have only one lesion in my cervical spine but it causes me great grief. I have a positive LP test.

We are very similar in this regard.

My right side is the only side affected to date. It started in my foot and has moved into my leg, hip, arm, hand, fingers, and shoulder.

It's my left side. Started in leg, moved into arm including hands and fingers.

Ampyra has been the biggest help for me. It has changed my life.

It's these type of statements that get me going. I have heard others say the same. I know my symptoms and enough about MS to really be hopeful about this.

There's a chance insurance will deny it. They initially have due to lack of EDSS score. It's that score that could be a problem...I'm at the far end of the scale. I will most likely go to 4-AP if Ampyra is denied.

[Crewser]

Sorry for the long post here. . .

I will most likely go to 4-AP if Ampyra is denied.

Don't get discouraged if the 4-AP doesn't help much. It seemed to only help on slight occasions for me and I was on it for a year. Could be because it is instant release and I wasn't really good at remembering to take it. I also had to adjust it constantly. Started 6 hours apart down to 5. Stuff like that.

Having said that I would still try it again if I had to. It was because of the 4-AP that I was skeptical about Ampyra. I even argued with my neuro about it. Now I can't thank him enough for pushing me.

And remember we went after Ampyra for Fatigue more than anything else.

People still don't believe me that it helps the fatigue "for me" but it does. My neuro felt very strongly that it would. He was right for "me".

The only other thing I forgot to mention before was a test that was given to me in the very beginning. I apologize for my non-medical description but. . . it was a test that checked my levels of immune system.

For instance my neuro told me we have "missiles" that shoot off for our defense should a virus or anything attack. Well in my best description he told me we have say 3 missle sizes. Small, medium, large to corrispond to the level of attack.

Forgive my analogy I'm not a doc. Well my small and medium missles were within the normal range but. . . my large missles were over the limit. Well over. So he asked, urged me to go onto Betaseron to release some of those missiles and in the process keep me in limbo for as long as we could.

Did it work? Who knows. He is honest and tells me he would have to clone me, one with, one w/o to see but again strongly encourages me to stay on it. I chose to stay on it.

Now he tells me I am very rare. DUH! But admits to a peri-hemispheric type of MS. Most likely PPMS. Is he honest? I believe so because he tells me straight up, "I wish I knew how to stop this for you, but I don't" however he tells me the things in the pipeline that he thinks will help me best. I like that kind of doc.

Sure hope this helps.

[Windwalker]

Sure hope this helps.

Absolutely, I appreciate it more than you know.

Thanks

[SpringOwl]

Why MRI's

My PPMS began in my feet. I was 39.

I was just diagnosed. I am 45.

I don't know what is considered fast progression. I know my left arm and hand went fast - about 5 months.

I still walk but left leg is weak and both legs have spasticity and pain. I can only walk short distances. Maybe 100' without rest on a good day.

I had 3 or 4 MRI's for diagnosis but since MS is progressive why do people need more?

I don't mind them myself just don't see a reason to have anymore.

If there is a reason, please share.

[sniper762]

red7172 and other advanced ppms'rs.

i can relate to your condition.

i wish not to post my condition completely on this forum, because i dont want to pomote negativity.

if interested, email me at *** Moderator's note - e-mail address removed per MSWorld guideline #3. Your e-mail address can put in your profile for all registered, logged-in members to see

[Windwalker]

Sniper762

Hello,

If 762 stands for the month and year of your birthday, then you are 1 year younger and I would be tremendously interested in hearing your experience. I respect your decision to not post details of your condition so if my assumption is correct, then I ask you to please:

Post the high level details without going into details you feel are too negative.

OR

Look at my profile at send me an email.

In any case, I wish you well Sniper.