When you're mention "agressive MS", I'm assuming that you mean Primary Progressive MS. Unfortunately that is agressive, and as far as I'm aware, the medications that so far have been made available to us (DMDs), don't treat that classification of MS. It's not a case of not diagnosing MS early enough, it's just that research has not yet found a drug to help those afflicted with PPMS.

Apparently the number of lesions one has doesn't have anything to do with the severity of the disease. I've read that's it's actually location of those lesions that have more of an impact.

We recently had a thread about this, but I can't remember it's name.....sorry! Maybe other members will and so be able to provide you with a link.

It seems that people with progressive MS don't have relapses...they just keep progressing. Please correct me MSers if I'm wrong here.

Why don't you just give her a call and apologise for not getting back to her. Say you had things on and it slipped your mind....or similar.

It's up to you whether or not you disclose your own MS after you've re-established contact. Remember that while it might give you a conversation topic, it might also be a downer for you if your friends are negative when they discuss the condition. Only you can judge that as you're the one who knows them best.

Good luck in whatever you choose to do.

UGH! I'm sorry to hear about the theft. My hubby left a GPS in the car once at a hotel and woke up to a police officer knocking on his door. someone broke into the car and only stole the GPS. So I understand the frustration.

Don't let the worst get to ya regarding the MS. I know it's hard. My mom had a very aggressive form of MS as well - hers was PRMS, which is rare. So it's in the back of my head sometimes that I might get as bad as she did.

But I have options she didn't have as far as meds and knowledge go. Also found out that I'm stable for now and am still on the RRMS bandwagon.


Oh and to explain PRMS - Progressive relapsing. Steady progression with flares that don't fully remit. At least, that's what I remember.

I am pretty sure PRMS is what my friend has. He went down hill very quickly. There was no point where he had a flare and recovered.

I have read too that there are no medications for this type of MS. His wife feels if they had only tried MAYBE he would not be totally disabled. It is very difficult for her. Their 4 children where still young and in school when this all started.

There were times we didn't think he was going to live. He seems to have stablized. I mean, how much worse can he get before he actually passes away?

LA

Hi LA,

Glad Y'ALL made it back safe and had a good time, but sorry to hear about the theft. Good for you for not caring all your credit cards, etc. in your purse though . . . if they got mine, I'd be spending the next month cancelling everything.


You are correct that most of the disease modifying drugs that are available to those of us with RRMS, have not proven helpful for PPMS. They think that the disease starts out as inflammatory (causing relapses), then switches to more of neurodegeration, so even those with SPMS often don't have much luck with the immune modulators.

Although PPMS generally has less inflammation (lesions), it is my observation that a lot of those in this category are often plagued with severe spinal lesions too. Spinal lesions can cause permanent damage from the get-go, rendering us quickly in the category of PPMS or PRMS.



Many lesions are transient, in that they come and go, based on inflammation. It is when they don't repair adequately, and/or depending on where they are, that likely causes us the most difficulty.



One of my closest MS friends, who recently passed away, was PPMS and confined to his bed when I got to know him. I must admit, I was very afraid to visit him at first, because I knew how disabled he was.

He is my hero and inspiration. He was one of the most amazing people I've ever had the pleasure of coming in contact with, mostly due to his attitude. He taught me a lot about how to cope (practical aspects), acceptance, and keeping things in perspective . . . with a sense of humor.

So . . . depending on what kind of guy he is, it might be the best visit you ever have with a MS-comrade, LA.

Cherie