Difficult time

[fortywhat2]

Ok, so let me tell you I just typed a lengthy post and hit escape accidently and lost it... ok I'll try and remember!  I'm looking for answers to questions that I don't know.  Does that make any sense?  I'm reading all these posts and can't find the answer I'm looking for but, I'm not sure what the question is.  I think I have so many questions that they all get jumbled and confused.  Does anyone understand what I'm trying to say?  I was dx'd 8/08 and told there is no treatment for PPMS.  I'm having a difficult time with that.  I guess one of my questions is... does anyone know, or know anyone who also has PPMS and how they are being treated, and is it helping?  This isn't as good as my post I deleted but I forget sometime (ya think).
Thanx
Debbie~live as if all your dreams came true~

[shoshin]

I thought of you when I saw this recently:

Interferon beta for primary progressive multiple sclerosis

summary: Beta-interferon is a useful treatment for relapsing-remitting MS, but it is generally thought to be ineffective in primary progressive MS. The objective of this article was to review studies of beta-interferon in primary progressive MS. Although it reduced inflammation in the brain, there was no effect on disability progression. The authors concluded that further and larger studies are needed to determine whether it has any role in the treatment of primary progressive MS.

(this is from a Cochrane Review,
http://www.msif.org/en/research/ms_research_news/interferonbetafo.html)
Anyway, neither of these say the drugs will work in PPMS, just that it hasn't been proven that they don't. My neuro keeps telling me that since I don't have acute inflammation and that is what the regular DMDs are known to work against, they aren't likely to help me, which also seems to be why it's widely thought they don't help with progressive MS (I don't have PPMS, but when the neuro was first talking about MS I was convinced I must have it until I remembered a brief incident from several years prior which was presumably a mild relapse. My neuro thinks I am (or was) having "subtle" relapses. Anyway, I read quite a bit about PPMS at the time.)

Basically, this seems to say that it's just really hard to prove anything with MS and it's especially hard to prove anything about progression.

Anyway, there seems to be a lot of interest in the neurodegenerative (as opposed to inflammatory) aspects of MS so hopefully there will be some research that pans out soon. Keep your eye out for trials, although the only one I could find on the clinical trials site for PPMS that's not for symptoms is the FTY720 trial (http://clinicaltrials.gov/ct2/show/NCT00731692) which is in Canada and I know at least one person who tried to get in touch with them and was not successful.

sho

[Lulu54]

Deb,
You may want to look at the clinical trials site - clinicaltrials.gov   I just did and put in "progressive ms" in the search and found a few ongoing trials that are recruiting patients.  

The research into the progressive ms seems to be getting a new look these days .....  I hope you find something that will be of help.

Lulu

[Deb61]

Here's something I came across (unfortunately not the full article) about PPMS:

http://www.thisisms.com/article102.html

Also, have you considered doing trial drugs?  The MS Society or other groups may have information about these trial drugs and/or therapies.  

Boy, I feel for you Debbie.  I'd hate to be told that there wasn't a think they can do.  That just doesn't sound right for some reason.

Deb

[fortywhat2]

Yeah she's an MS specialist and is definetly watching out for my best interest just wrote a 6 page letter to my ins company for my disability claim.  Have also checked my local chapter... on their site all the time,  thanks for you idea's though!  I appreciate it
Debbie
~live as if all your dreams came true~

[Karen99]

If at all possible, be sure to have yourself a neurologist who is an MS specialist (as Deb states above)  In my experience, those are the doctors who are enthusiastic and knowledgeable enough to benefit an MS patient.   Often they have a true interest in you, and listen to what you are saying.  Most keep up on new research and have seen all sorts of MS patients and this will benefit you directly.

Make contact with your local MS chapter and their website.  There is a lot of information to be had there.  

[fortywhat2]

Hi Deb,
Thanks for the reply and information.  Yes, a lot of Debbie's growing up!  I am seeing an MS neuro at one of Boston's best hospital and I really like her.  Have gotten other neuro in put and all the the same... nothing yet.  I would be interested to see if anyone out there has tried something out of the norm with results.
Thanx again
Debbie
~live as if all your dreams came true~

[fortywhat2]

Thanks for the response... I can understand the obsessive online research... do it myself.  I found the same thing you did.  I was hoping someone out there tried something anyway and found some benefit.
thanx again
Debbie
~live as if all your dreams came true~

[Deb61]

Hello from another Debbie!  Debbie was such a popular name when I was growing up.  There were more than two or three other students in each of my classes that had that name.

I can't give you a 100% sure answer as I have RRMS and do research looking into this disease, however, I do think there is some hope for treatment for people with PPMS--as there's been some new drugs tried for PPMS.  We do have people on this forum with PPMS that will pipe in with a response.  I have heard that there may be some benefits of Copaxone, used to treat RRMS.  

Have you had some second or third opinions?  It's possible that you may need to see another neuro.  Is your neuro an MS specialist?  If not, I'd see one.  No wonder you're having a difficult time with your diagnosis!  I would want someone to give me some treatment options and some hope in conquering this diease.  

Deb  

[PastorDan]

New here myself, Debbie, but we will pray that you find some help.  (I hate when I hit the wrong button on one of these mamchines, too, by the way.)  I am undx, but I can tell you that I've received the impression from my obsessive online research that the information you were given about PPMS is, unfortunately, correct.  I hope I am wrong, and would love to see one of the more experienced and more expert members chime in here with better information.

Yeah, I know someone's going to ask.  Snow caused us to cancel church this morning.  That's why I am able to post here.  Peace to all.