[Kitty]

MSbelle, your doctor probably doesn't want to classify you as having PPMS (even if he believes you do) as insurance will not cover any DMD's for folks diagnosed as PPMS.

I think I'm SPMS but I'm still listed as RRMS on my medical records because my neuro wants to keep me on Tecfidera. Maybe he's right....maybe I'm not yet to the SPMS or PPMS point but some days it feels like it!

[MSbelle]

I've been reading about Tysabri having some positive effects on PPMS. I'd REALLY like to just go straight to this medication but insurance won't let me. And we're not millionaires so we can't afford it out of pocket.

Has anyone heard of LEMTRADA? My neuro mentioned that that would be the one he'd like me to start on first... seems rather extreme (it basically knocks out your immune system so that it can rebuild)... 5 infusions over 5 days, then a year later, 3 infusions over 3 days and you're done. It's risky though, of course. There have been deaths. And it's 95,000$.

I think he thinks it could help with PPMS, though he won't say it

[Kitty]

Originally Posted by MSbelle

I've been reading about Tysabri having some positive effects on PPMS. I'd REALLY like to just go straight to this medication but insurance won't let me. And we're not millionaires so we can't afford it out of pocket.

Have you tried to see if there are any patient assistance programs (PAPs) for Tysabri?

It's the only reason I'm able to be on Tecfidera. There's no way I could afford the nearly $5K a month this drug costs.

It might be in your best interest to explore what drugs have a patient assistance program. You can see if you qualify even if you have medical insurance.

Usually the drug itself has something on its website regarding patient assistance.

http://www.tysabri.com/support/cost

Good luck!

[SwanLake]

Hello all. I don't have PPMS, but my ex husband was just diagnosed. It's very hard to accept his diagnosis even though I know he has it. (10 years together and he is a big hypochondriac). I'm trying to do research on his illness.

May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?

In NO way am I being disrespectful. I'm just trying to understand this illness.

Thank you

[kicker]

Originally Posted by SwanLake

Hello all. I don't have PPMS, but my ex husband was just diagnosed. It's very hard to accept his diagnosis even though I know he has it. (10 years together and he is a big hypochondriac). I'm trying to do research on his illness.

May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?

In NO way am I being disrespectful. I'm just trying to understand this illness.

Thank you

You can't. There is no timeline, no telling. MS is very unpredictable. Somebody said "If you've seen one case of MS you've seen one case,"

[MSbelle]

Originally Posted by kicker

"If you've seen one case of MS you've seen one case,"

This is great! SO TRUE! I will use this saying from now on probably daily!

[MSLazarus]

Originally Posted by MSbelle

I've been reading about Tysabri having some positive effects on PPMS. I'd REALLY like to just go straight to this medication but insurance won't let me. And we're not millionaires so we can't afford it out of pocket.

Has anyone heard of LEMTRADA? My neuro mentioned that that would be the one he'd like me to start on first... seems rather extreme (it basically knocks out your immune system so that it can rebuild)... 5 infusions over 5 days, then a year later, 3 infusions over 3 days and you're done. It's risky though, of course. There have been deaths. And it's 95,000$.

I think he thinks it could help with PPMS, though he won't say it

Hi,
Sorry I am so lazy that I did not copy and post the Lemtrada info! But it is on the Braintalk site...on the first page of General answers....

If you do not find it let me know. Lemtrada was called campath while being developed.
Linda

[nursemom]

Hi Sally, I am new here and this is my first reply. I was dx. SPMS when I changed to a new neurologist after being tired of 5min. visits with the neuro that dx. me in 2000 with RRMS, even though it was determined that I have had MS since I was 19 and I am 47 now. I had started having nerve pain in both hands and both feet and my old neuro would only give me one vicodin per day after maxing me out on neurotin was not working then sent me to pain control. I explained all my symptoms to my new neuro and he changed my dx to SPMS at my 1st visit. He said that since I had not really had improvement, but constant pain and fatigue issues, along with a few years of getting IV and by mouth steroids for what seemed to be exacerbations but no improvement that it was obvious that I had moved on to SPMS. I have not noticed massive changes, maybe small things cognitively and have not had IV steroids except once for an active lesion since around 2010 I think. My memory is poor, and my husband that was my "memory" among so many other things, passed away this past March 2014, so I can't ask him the date sadly. I hope this helps some. Love, Hugs and Prayers, Linda

[SallyC]

Hi Linda and welcome to our little abode.. .It's late and I'm just about to hit the hay,
but wanted to welcome you and tell you how happy we are to have you here.

[msbluis]

"[May i ask, how long after diagnosis have people experience bad symptoms such as a weird slide gait with one leg one minute and running around a horse arena the next?*"


That is a good and reasonable question.

I'm 60 and I've had PPMS for 20 years, so I feel I can answer based on my and other PP folks' experiences I've come across.

For MS to be classified as Primary Progressive, any weakening or loss of body function caused by MS never improves. In fact it will continue to progress to the point of total inability to function, if not completely, to the point of near uselessness.

For example, when I first began to have foot drop, after 4-6 weeks it progressed to foot drag, then to leg drag, then progressed to an inability to lift the foot and leg all together. I'd have to lift my leg into my car or up any stairs with my hands. It took about 2-2.5 years to completely lose all use of each appendage.

During that time the bladder quit working correctly and after trying several bladder meds like Oxybutenin, Detrol and Ditropan I did intermittant catheterisation for a few years until I could no longer transfer to a toilet, and now I've had a suprapubic indwelling catheter for 4 years.

My left arm is now useless and my right hand and arm operate at about 50% now. I can't write legibly any more, feeding myself is difficult and messy, but I can do it if someone cuts it up for me. The way I've progressed, I will be unable to feed myself any longer in 6-12 months.

No matter how reputable the neurologist or how promisingly hopeful the meds, (the CRABS, Novantrone, Tysabri, steroids and IV's), nothing has been proven yet to slow or stop progression in PPMS, not meds, not diet, not exercise. Odds are good that other's PPMS progresses something similarly.

If other folks MS has progressed much differently than mine, I think other people with PPMS would like to know.