PPMS and SPMS Support Thread
 

This sticky has been added to fulfill a need for those with Primary Progressive MS, and Secondary Progressive MS.

Both PPMS and SPMS differ from Remitting/Relapsing MS, and we recognize that members in these classifications of MS have different needs to members with RRMS.

With that in mind, this thread has been formulated for those members to discuss their trials and tribulations, or to simply keep in touch.

I hope all will find this thread beneficial.

Hi Annie, I'm not PPMS....I guess I'm in the SPMS club, but what's in a name.?

That's my question....What reasons did your MS Neuro give you, for a DX of PPMS? Do you feel like you are constantly progressing in disease and disability? Do you reach a plateau, when you stop progressing, for a time? Have you tried LDN, to maybe help keep you from progressing so fast?

I seem to have stopped progressing, but am pretty darn stuck in a scooter, for getting around.......and, I am deffinately progressing in age..:eek:

I hope my questions are not intrusive. in your support thread? If so, please delete it and just know that I support you..:hug:

Hiya Sally :)

our Koala doesnt have PPMS but has started this sticky because we had a request for a subforum for those dealing with PPMS and it was felt that a dedicated thread may be the way to go for this

hope this will prove helpful for all who have PPMS:grouphug:

Thanks Chamar...duh!!:o

Maybe some other nice person will come along and answer my question. :)

I think this is wonderful. I am sure all those with PPMS will appreciate it very much. When will it be up and running?

Thank you so much for your kind words Sal, but I personally don't have PPMS, I have RRMS.

This new thread was commenced in reply to a request for a place where those with PPMS could talk about the problems that they have. You'll find the post in Community & Forum Feedback: http://neurotalk.psychcentral.com/post591766-41.html

It's up and running now Sandy. Please feel free to be the first poster to get it off the ground!

I do hope that the thread serves the purpose for which it was commenced.

Sally C, I think a place for Primary/Secondary MS would be great, as both (PPMS and SPMS) have their own concerns and questions. I know I can't always relate to RRMS stuff. I will PM you with info. on finding more specific SPMS info. We could also keep each other informed on upcoming (and rare, I think) clinical trials on PPMS and SPMS - I know Johns Hopkins is to start a Phase II or III trial of Fingolimod on PPMS. They have contacted me but being non-ambulatory, doubt I'll be included in trial. Oh well. (I really mean Poop!)

.

In 94, I was dizzy and tired but between have little kids and working was not too concerned. In 2002 told my PCP my worsening urine (urge incontinence) was a problem. She pooed-pooed me, attributing it to twin birth and age. I said I thought it was neurological. Having sent me to a neuro-opthamologist who found nothing, she sent me to a neuro after making me promise to stop looking for answers if he also found nothing. After Evoked Potenials, LP, MRiI- there was no question I had MS. And here I am. For 8 years It wasn't baD, FOR 2 YEARS AFTER DIANOSIS i THOUGHT "NOT TOO BAD, NOT DEVASTAting like I've read. (attack of the caps., sorry) But walking got worse, in 98 went in a chair in 09 stopped walking all together. I have no pain, but left side not very responsive. I have no tingling but can't walk either. BUT, we all differ in our Journey. I read of people still on plateaus after years and years or those who progress quickly. Who knows?

I do not agree with feeling PP is the worst. I hear stuff about RR I do not ever have to feel - I just don't walk.

My first neuro (now director of MS Clinic at Johns Hopkins) put RR on form, but now I read most Neuros do as Insurance will not ok DMDs to PPs and DX of RR gives patients a chance to try DMDs. From lesion size and amount (less in PP than RRs!!) and having never relapsed and anecdotal history, I self-DXed PP, confirmed by neuros after. 1st neuro became unavailable to me. I've done Rebif and Novantrone, 4-AP all with no success. Want to try LDN, which my current neuro will not prescribe but will use info you gave me to get it.

PPMS myself, the only bad days I will have is when they end?:winky:

All fixed!

The thread name has been changed to include both PPMS and SPMS. I hope that fixes it. :)

Well, I think PPMS is a bit more incidious than SPMS, which is an advancement of RRMS. We do have certain things in common, one being, that there is no effective DMD for either...and another being, that we don't have remittances and remissions.

:grouphug:

I never remit, hope that being older (46 at DX) means I'll be gone or close to it if it gets really bad (!), Have never (never say never with MS, who knows what may happen), had blindness, no numbness, only when trying to use it pain/discomfort in left knee, no tingling, other than STM loss, no real cognitive losses other than "Too "much of anything can feel overwhelming.
I do have PPMS, am in a chair (Wheelchair Kamikaze (Marc) has influenced me, tend to "zoom" whenever I can. DH gets no end nervous.) But what I'm saying is yes, it sucks, but it could be worse. Anyone with PP try LDN? VCCSI and stem cell interest me. Fingolimod does too (but is it I like the name?)

my history
 

I do not know when my first lesion(s) began to appear. I basically ignored them thinking that it was just due to being flat footed as a child. I had to wear really ugly shoes but in my 20's, I wore high heels and short skirts!

It started in my early 40's but again, I ignored it and was not diagnosed until it progressed from just numb and cold in my feet to numbness creeping up to my abdomen.

Dispensing with all the MRI details, I will never forget the day when I was called into the PCP office and told I had MS. I did not even know what that meant. There was not even a neurologist to be able to see (note: I have GOOD insurance, or that is what I thought) for 3 months. PCP told me not to go to the internet, lots of false information.

Like I was going to not head straight to my computer!!! First thing I read said "no cure and hopeless." No wonder the PCP told me not to look.

I sent an e-mail to one of my brothers, a neurologist in San Francisco, to tell him my dx. He called immediately telling me to go to the ER. A neurologist is required to be in the hospital.

I did not want to go, the PCP had let me go home and going to the ER would be extreme. DB insisted on calling PCP and called me to say go to ER. I did.

After lots of tests and steroids, MS dx confirmed. Dx'ed as RR for first year to see if there is a remission of sx. There was no remission of sx ever, even before dx.

So, a year later with the location of lesions plus no remissions and age of sx's, PPMS dx.

I go to Mayo right now, as long as insurance will pay for the doctors there. Everyone is very agreeable and I have tried a bunch of medicines. I get whatever I want but there are no trials going on right now with Mayo.

This is the short version of my PPMS!! No remissions, just increasing paralysis but slow. Pain factor is about the same.

Mentally a bit slower but not much to be a concern. Not everything is about MS.

Aarcyn is as mentally alert as I'd like, she usually beats me in Trivia.

Of course I read every thing I could on Internet. Much of it really scared me as I waited for things (haven't had yet) to happen. Devastating I was told, really played with my head. One day at a time was advice I liked.

This type of MS is characterised by a gradual progression of the disease from its onset with no remissions at all. There may be periods of a leveling off of disease activity and, as with secondary progressive, there may be good and bad days or weeks. PPMS differs from Relapsing/Remitting and Secondary Progressive in that onset is typically in the late thirties or early forties, men are as likely women to develop it and initial disease activity is in the spinal cord and not in the brain. Primary Progressive MS often migrates into the brain, but is less likely to damage brain areas than relapsing/remitting or secondary progressive - for example, people with Primary Progressive are less likely to develop cognitive problems.
*******
Sadly, this is the most positive thing I've read. PP is not labeled the wrse that can happen. I was 46 at diagnosis, I'd had a couple of adventures.

Re: CCSVI sounds great but not PP-friendly Any thoughts? (no, Bufflo too far away for me, anyone going to trial testing there?) They are just looking at veins, no shunts/shents

Contact info in Bufflo re:CCSVI.Be patient, they're getting a lot of interest in this





Michelle Andrews
Project Coordinator
Buffalo General Hospital
Buffalo Neuroimaging Analysis Center
100 High Street
Buffalo, NY 14203
CTEVD Study <ctevd@bnac.net>

Any PP's do stem cell therapy?

I just want to be a lab rat and give it a try. I think studies are being done in Israel. Too long a commute but it sure would be cool to see the Wailing Wall.

So it's settled, we'll go to Israel - ah one problem - you paying? Or shall we just do lunch?

Maybe we can get a group rate. :D

I have a feeling that my MS (1st symptoms in 1964), is too old for a cure. I think LDN has been keeping me from progressing in disability (except for my age), for the last 6+ yrs.

If this treatment can do this for you PPMSers and SPMSers, I say go for it. All surgery is dangerous, but certainly not moreso and perhaps less than the DMDs offered.:grouphug:

A group rate which includes good meals!!! I'm (cough- cough) older with old MS that's put me in a chair, Stopping progression is my only hope at this point (or a miraculous great cure and time travel thing!!)

Kicker - how much has your PP progressed lately? Has the slippery slope leveled off at all?

No big leaps or bounds, but maybe baby-steps of progression only evident right now to me. Holidays aren't helping it now or added needs of family in college search.

I agree with you. Once I see that patients who undergo the procedure no longer have stents floating around their heart, I would be ready to climb on the operating table.

There really is nothing else out there to help most of us.

gmi

Hi fellow PP and SPMSr's! Have you with the PP variety tried LDN? I know it's not specifically recommended for it, but with no or little side effects, it just might slow down progression as it's done for me -- and Sally (right?).

Another question -- do any of you have severe bladder problems? I've seen the new med, Tovias(?), and wondered if anyone had experience with it? I've been on oxybutynin forever and it doesn't do the job as well as I'd like. It dries out my mouth just great though! Have an appointment with my pcp this Thursday so thought I'd question him about it.

Are you extra tired/fatigued lately? Maybe it's just the thoughts of getting ready for Christmas that are exhausting me -- changing temps too. Depressed, down and disgusted!!! So many community events happening, shopping, etc., and I'm stuck in the house. :( Tonight I seem to have an "eye headache" on the left side. Sure hope it isn't an indication of things to come. I HATE THIS DISEASE!!!! :(

Judy,
I want to try LDN. My neuro poo-poos, but a message board mate has given me a name to contact. I used Oxybutyin - it made my mouth a desert but didn't help make me pee less than Vesicare I once took. So switched myself back to Vesicare. I take Amantadine 2X a day for fatigue, tried Provigil which did not help, but everyone so different in meds and what works for them!!

Look at the number of views and on thread. Comon, make yout voice known. Just say hi.

Thanks for your thoughts, Kicker!! Yep, this lousy disease has to be so different for everybody that we all have to find what works best for us. And....I didn't go to my doctor Thursday after all. This darn weather with the rain, cold, rain, more rain, etc.....has me so sore and stiff, there was no way I could imagine getting into and out of a car twice besides just getting ready to go! :( Come on Docs......bring back the housecalls please!!!

Come out wherever you are PP and SPMS people!!!! Most everybody can't be RRMS!! That's just not fair!!! :)

Judy, I am sleeping more when I can, DH, morning lark that he is, let me sleep tp 7:45 today!! He's up at 5. Sometimes I practice in the mirror saying "your Honor, that's why I had to kill him" 8-). I hope it's the thought of getting ready for Christmas making me tired, not progression. Ide hit a level place but feel more cross-eyed lately, tired and turning in bed 180 degrees is harder. It's like the cotton underwear is Velcro on cotton sheet. Nylon makes it easier. I'll buy a satin fitted sheet to try. I wear Poise pads 24/7 now, so cotton undies really don't matter. I sleep good but need to turn to get pressure off limbs.

There are probably more PP & SP peeps out here, who are no longer having exacerbations, but It's a hard thing to admit, especially when the Docs are DXing us RRMS, so they can fill us full of their fav DMD.

:grouphug:

Sally, think you're right. PP and SP are scarey. Like "abandon ye all hope".
It's a different can of worms. I pushed me (and DH) a little further tonight, got to buy some stocking stuffers and diffusers(scents) I wanted. I needto speak up for things.

Kicker - What kind of mattress do you have?

We want a Tempur-pedic but that is on the "wish list" along with a dishwasher! I am not sure how easy it is to turn around in the bed but there is a 90 day guarantee.

My problem is where to put my "old" mattress when trying the tempur-pedic.

He needed killin should be a justifiable defense...:eek:

We found the mattress toppers very effective. And get a good one that is at least 2 in thick. They just go on top of your mattress and provide alot of pressure relief.

I have heard that the full Tempurpedic can be hard to move around in and also hard to get out of. The foam material also is HOT, which some do not like at all!

I have a fake tempur --pedic (still cost about $1500), and it does take some effort to turn over. It also gets rather hot in the spring/summer. I bought it about 3 months prior to first ms flare. My sis has an authentic one, and she loved it when she was pregnant. She says you do not feel the need to roll over much. But it too is hot.

We have a hard (firm) mattress DH picked out for his back. Even so I have trouble rolling over, swear cotton undies stick like velcro to cotton sheets and down quit and piecemeal quilt (needed in the winter cold here) are heavy to me. I fear therapudic will be too warm ( In summer I hate A/C at night, depend on ceiling fan and open window) but dislike HARD mattress. DD swears by down topper she has. I should borrow for a few nights.

If that tempur-pedic is a foam mattress, you need to give it a try first. I have a horrible time turning around or getting out of one.

My husband had to grab my legs and pull me out of those beds every time we hit one at a hotel.

I wouldn't have one in my house if it were given to me.

gmi

This is very true. We have bought many of the mattress toppers throughout the years when we were staying in hotels or in between moves and not in our own beds.

The last one I bought is what I have cut up to use in my manual wheel chair. I put 4 layers in the seat and it is so much more comfortable that any of the wc cushions I have sat on.

gmi

DD tells me her down mattress topper would be terrible for me when I tried to turn.

If you put it under the mattress pad it is fine. Otherwise it grabs you just like the tempurpedic foam grabs.

gmi