A month ago my doctor told me I was SPMS, then she sent me to another doctor to see if he agreed with the treatment she's recommending. He told me I am PPMS. I asked the first doctor about this and she said they are both progressive and similar and it's just semantics.

Whatever.

New member with PPMS
 

This is my first time to this group and my first time posting, so, if I mess this up - sorry! Anyway, I have PPMS and have been looking for a group to join where others know what PPMS is and can share in advice, support and such. If anyone reads this, will you please let me know I'm in the right place and on the right track? Thanks!:)

PPMS is Primary Progressive Multiple Sclerosis - for me that has meant progression only, never a remittance. From no one would suspect (me, doctors) to a variety of aids (crutches, walker, etc) to current use of power chair

I think I've hit plateaus twice, I think I am currently in one. My PPMS tends to be very physical - I can't walk, am in a chair - but cognitively seem ok (Other than expected age-related stuff) Everyone is so different - symptoms and approach to MS. (DMDs, diet, nutrition, etc,)

When first diagnosed I read too much and waited for stuff that never happened to me. I believe in being educated and informed but was making myself crazy.
Best to deal with what actually happens.

Everyone is different like Kicker says. Even within your own category (Progressive or RR) people are different. I have never stopped progressing and need to use a cane. I have tried many meds, chemo, botox, PT - some things help, most really don't. We're here to help each other and give each other ideas.

Glad I found this place
 

I'm so pleased that there is a PP/SPMS "mini-site" here, as I have been searching and searching for a place to talk to other PPMSers and had no luck - until now.
Here's my story: had first symptom (partial numbness in right leg) 18 1/2 years ago and within a few days I had partial numbness in both legs and up to mid-torso. I just kept adding symptoms that were fairly mild at first for several years. I went from dr to dr to dr for TEN years and even had spinal surgery (for compression at C4/C5) which did nothing to alleviate any symptoms. I finally SELF-dx in 2003 because I read-up and researched and knew it must be some type of MS, but it still took 3 more drs and 2 more years before I got a neuro to do an LP and a VER (rather than just another MRI) and even he said: "You PROBABLY have PPMS." As you know, this dx is a "negative" one; meaning, you rule out everything else under the sun, do a zillion tests, add up years of symptom history and say "hmmm, we know what it isn't, so I guess it's PPMS." You see, I have NO brain lesions, so every dr was convinced it couldn't be MS. WRONG!
I am now a triplegic, use a power chair full-time and need help with 90% of daily tasks. Thanks for listening!:)

PPMS or SPMS?
 

I know your post has already been replied to, but, I felt I needed to add my "2 cents" as it were. PPMS is PPMS from DAY ONE. SPMS is almost always a secondary phase of RRMS. Yes, once you have SPMS you are similar to PPMS because you are continually progressing (maybe quickly, maybe slowly.) It is NOT just a matter of semantics, as your dr put it. I wish more drs were more communicative and took the time to explain things. I know this doesn't really "help" in any real way, but, I wanted to share my viewpoint with you.

Anyone still here?
 

I'm the newest member and, alas, no one has posted anything since I joined. Is everyone doing poorly or perhaps too well (hoping it's the latter)? My PPMS recently became very active again, after being on the "mystery plateau" we all speak of, and now I am experiencing extreme fatigue in the afternoons. I'm almost 19 years into this disease and hadn't been hit like this until now. I tried Provigil for several months and felt as if I wanted to leap out of my skin and scream 24 hrs a day. Same thing happened when I tried Neudextra for PBA (pseudo bulbar affect.) So, it is plainly obvious that stimulants are NOT for me! Guess it's a good thing I never took up drinking coffee or tea (never liked the taste, believe it or not.) So, every afternoon around 3PM; no matter what I am doing; my head falls forward and I am asleep just-like-that. If I fight it and fight it I can stay awake, but then I pay a very heavy price a few hours later - I have NO strength at all and cannot move my one good appendage (right arm) which means I cannot feed myself/eat dinner.
I really hope someone will answer/chat with me. Pretty please? ;)

Hi and welcome to the MS forum. :welcome_sign:

Most of our MS members tend to post in the general MS forum regardless of the stage of MS they are in. I guess the PPMS/SPMS thread is good for specific questions relating only to primary progressive and secondary progressive MS. I think our MS community has just blended into one big group. As you'll see our PPMS, SPMS and RRMS members all post in the general MS forum and The Stumble Inn. The Stumble Inn is a sub-forum to the MS forum where we can discuss topics other than MS. Here's a link: http://neurotalk.psychcentral.com/forum102.html. Please visit The Stumble Inn as we have lots of fun topics always going on there. :)

Hi AstaireGal,

I'm sorry you've been having fatigue problems.

I'm wondering if there's any reason why you couldn't just take a nap when you're sleepy as a general rule?
Maybe you have a job and can't take time off for a nap?

If so, you might be able to make arrangements so you can get a rest period in.

I've had MS for over 30 years and wouldn't be any good at all without an afternoon nap. I'm really strict about it. I try not to let anything interfere with it.

Thanks for answering
 

Oh, I DO take a nap - the one I described in my post;) In other words, my body falls asleep (naps) whether I want to or not! I don't work (had to go on disability in Sept. 2006), but my hubby is my caregiver and he works from home. So, come 3PM or so I just nod off while sitting in my power chair. Funny thing is; if I have my husband take a break from work in order to transfer me (using a patient lift) to my recliner; it makes me wake up and not be able to take a nap! Weird, huh? :confused:

That is so nice, that your DH works at home and can be there for you, in an emergency and just for comfort. God Bless Him. Hugs for you both. :hug::hug:

I wonder if it would work if you started getting ready for your nap before you start nodding off? If the nodding off generally happens about 3 PM, maybe you could have your DH transfer you to the recliner at about 2:30, and you'd ease into the nod-off phase while you're already in the recliner.

Or maybe you're just not used to sleeping in the recliner? If so, could you rig up your wheelchair so you could nap in it--as you apparently are doing, but making yourself more comfortable so your head is supported better, for instance?

Just a thought.... I'm sold on the idea of getting enough sleep.:)

Hi Astair G..........Welcome to NT. I just had to reply to your post about nodding off in your powerchair but not being able to sleep if you go to the trouble of getting into your recliner since it sounds just like me. Seems like the fatigue kicks in when doing usual "stuff" around the house since I'm alone, and before I realize it, I'm waking up stiff, sore and freezing. However, it's usually difficult to sleep regular hours and go for a couple days/nights without sleeping. I'm sorry you seem to have the same schedule, but glad to know I'm not alone.

BTW -- your hubby sounds like a real keeper!:hug:

lucky
 

My DH may not have the most fulfilling or high-paying job in the world; but we both know how lucky we are that his company started allowing a few people to work from home 4 years ago; and he applied and was given permission. There would be no way for me to be here alone for the 11 hours (8 working hours plus commuting time) it would be if he had to go into the office every day.

thanks for the suggestions
 

I'm too stubborn, I'll admit it. I like to stay in my power chair and be able to get things done during the day; so, I think I'll go with your second thought:)

I am in a powerchair 24/7 and my crossed wrench warning, warning symbol started flashing. Then the chair didn't go at all. DH was not far away and put me into push mode and pushed. But what if I'd been alone?! I called the rehab-fix place and they understood I was not cauterized, self-toileted but if I got stuck alone really bad things could happen. They said they could come tomorrow or day after. What!!!!! I smacked the folding arm with joystick into place, rebooted and as I told DH, "fixed it". But what if it didn't work? I have resources, what if I didn't? Being Handicapped is scary. Guy who came to help from rehab. found nothing he could do. He called chair maker and got advice neither of us found valid.

I always have a cell phone in my chair bag. And a whistle if needed.

Just registered
 

I wanted to introduce myself, Im a 43 yo man with PPMS

I was dx in 97 and just started noticing symptoms in the fall of 96. Since then I have been in a nice slow steady decline. Every year more function is gone. Not really walking anymore, not for any distance anyway.
Seeing a new Neuro next month. Of course I'm not expecting much, Oh well. This does suck!

Hi Bill, welcome to NeuroTalk.:) So sorry for your DX of PPMS. We have some wonderful members here who have your DX and I hope they speak up and compare notes with you.

I am SPMS, but this late in the game, for me, there is little difference in the two. After some 45 yrs with symptoms of MS, I'm pretty much done walking too.:mad:

Come on in and join us at the Stumble Inn, where we are a little less sicky and a bit more ourselves. Or join us where ever you wish.

We are here for you and us. :hug:

Hi Bill and welcome to the group! So sorry you have to be here too, but you'll find many supportive fellow MSers and lots of love.:hug:

Sally, I have a question for you. Your the only SPMSer I can think of right now and you always give such great advice. But anyone with SPMS can chime in too. I'll take advice from anyone :) Im now on year 20 with MS, and am wondering how you know when you've gone from RRMS to SPMS? Ive always recoved completely from my flares, but now Im not. I can no longer walk alone, I have to use a cane or walker, I can no longer walk long distances like thru the grocery store, I have to use a motor cart. Im constantly dizzy, that never goes away. Spasticity is a constant unwanted companion. It use to be the only time I got dizzy was when a flare was coming, now its constant. I have also developed foot drop in my right foot. I could go on, but you get the jist. I asked the neuro if Im now SPMS, and he said no in the same breath as he was trying to push tysabri down my throat. I know neuro's are hesitant to label SPMS/PPMS due to insurance reasons. Im just getting nervous now.

Hi KL. Yes Lord how those Neuros push TY..:rolleyes:

Well, I stopped having regular flares and just like you, no longer fully recovered anymore.

I don't want to tell you what to do, but if you are still having exacerbations often...2 or more per year, then maybe, you should try TY to see if it helps you. You could be one of the lucky ones :). If not, say after 4/6 mos, there is no improvement or ur worse, drop it and run like the exercise bunny.:eek:

Have you tried other DMDs?

I was on betaseron for 9 months, 10yrs ago. Had horrible reactions to it so I dropped it. Got scared off of dmd's til this past Oct and Dec when I had 2 really bad flares. 4 rounds of steroids later, and neuro said its time for a dmd. So he said the only ones I could try since beta caused me so many problems, was ty, gilenya and copaxone. I went for the least risky, copaxone. This is the last one I'll try for now until further studies or whatever are done on the BG12 and that new one I think is call Auggubie, or something like that. From my understanding the BG12 is just as risky as gilenya, so Im pretty much crossing that off my list of hopefuls. Ive wanted to try LDN, but I have a "contract" with copaxone that I have to be on it for one full year unless I develope an allergy to it. Im 7 months in, so not much longer. Doc is really pushing ty and omg, you should see all those MS patients in the infusion room. ALL but me were there for TY! Im sorry, but the chance of a deadly brain infection is enough for me to say NEVER. I have the worst luck with things. If the package says may cause drowsiness, guaranteed I will be out cold. One neuro put me on .5 valium for my spasms, knocked me cold for no less than 8 hours. Did nothing for the spasms! One med said may cause stomach cramps, well, guess who got 'em. Another said may cause migraines, well, same old story. I actually landed in the hospital because of a med side effect. Ive learned the hard way to take side effects seriously. If I have "graduated" to SP, then maybe I can stop all the shots and just do symptom management.

Phase 2b Trial of MN-166 in Progressive Multiple Sclerosis
 

Recently entered the SPMS Group
 

Only needed treatment for flares for the three years between my dx and now. I haven't had a flare in over 5 years, but my symptoms stay and have gradually worsened. In looking back I realize I had MS since my teen years and am 52 now so my doc says I'm SPMS.

So far I'm doing all right. My biggest problem is the destruction of my memory which caused me to leave my job in 2011. Without the stress of working, I'm a lot better, but my secretarial skills are badly compromised. I've tried to go back to work in the Administrative field, but three agencies have dropped me after I failed miserably in the skills tests.

Now I am trying to find some sort of work I can do, and still make a decent living; i.e., not working at McDonald's or Starbucks. I've actually applied for cashiering, server, and even baker's helpers, but never made it to the interview stage. I'm wondering, have any of you found a second career after MS caused a severe impediment to doing your usual work? I am at a loss as to how I can use my remaining knowledge to make a living. SSDI denied me benefits and I don't have the money to start a business.

Appreciate any thoughts on the matter. Thanks.

Catch, I'm assuming you're still mobile and have limited trouble getting around? I think I might be SPMS, too, but haven't heard it from the Neuro. I'm 52 too and have had symptoms since my 20's.....although compared to now they were very mild years ago. I had to leave my job in 2008 due to my worsening mobility and vision problems. Now, I couldn't work if my life depended on it. I was approved for SSDI but I understand how hard it would be if I hadn't been approved.

Have you investigated anything like transcription that you could do at home? I wish you luck in your search for employment.

I always feel like I'm waiting for the other shoe to drop, a nameless anxiety of waiting. At 46 was DXed with MS. Did Rebif 2 years and nothing, good or bad. Neurologist and I agreed, it seemed like classic PPMS, have never RRed. We also agree no more MRIs. First couple of years, didn't seem so bad, just had to pee alot. Then I started wall-walking and falling. From Canadian crutches to walker, 4 years ago went into chair. Some sleepless nights, stabbing pain, throbbing shoulder pain. But although still in a chair, can self-toilet, am tired in afternoon but don't nap. Still can't walk, memory seems fine although I am 57, no pain. Short term memory varies - is it age, lack of interest or MS?

But I can't relax, expect MS to take another punch at me. Don't dare to hope (in case MS is listening) I'm in a plateau. I'm totally confused.

Even though I am SPMS, and much older, I think we are on
that same damned plateau. I hear you Kicker.:hug:

I'm also SPMS...but I sure wish for the plateau.

The roller coaster ride I'm on is exhausting and there is no plateau in sight. At every turn, something else appears.

Stop the rides in this crazy MS fair ground...we all want to get off...even those who are on the farris wheel :winky:

With love, Erika

Also PPMS
 

This sure has been a quiet thread for quite some time.

I've searched for and read threads that have any mention of Tecfidera, but it looks like nobody has talked about it in this particular thread. I know that most meds don't help with PPMS, but my doctor has suggested that I try Tecfidera anyway. What I'm wondering is: do we have evidence that it doesn't help PPMS, or do we just not have evidence that it does?

I also have an opportunity to get into the next phase of the MN-166 trial. Anybody care to share your opinion on whether or not this trial might be a good thing to try?

Last question: is there any indication that Ampyra has any effect on people with PPMS?

I did Amypra (also once known as Fampridine or as I affectionately called it Bird Poison). Obviously it did not do anything for this PPMS person. But, as someone once said, if you've seen one case of MS you've seen one case. With MS you never know what will happen or help.

Being DXed with PPMS, I find my insurance company will not pay for any drugs that say RRMS use. Besides Novantrone (which did not help me) they only allow pain meds. Know of no approved DMD for PPMS. Does anyone?

Every time I see my neuro, I ask her if there is a treatment for me, and she says no. And since all the meds I've taken for symptom management have either not helped or I had bad side effects, I now take nothing. And I have to say I feel much better since I'm off all meds - less weak, less tired, and I have less spasms. Of course I realize this may not last, but for now I feel better. But it's beyond frustrating there is no treatment for PPMS.

There is really no treatment for anything other than RRMS..:mad:

Really Sick of This......
 

:mad:Yep, time for another rant. Why can't the powers that be find something to help those of us with a "progressive variety"??? It seems hard to imagine after all this time, there still is nothing. My body is saying "ENOUGH" -- now I'm on my fourth course of antibiotics in about three months due to UTI's. I realize they're more prevalent when using a catheter, but it's either that or the Hoover Dam overflowing constantly.:hissyfit:

Also my legs are causing more problems lately. Looks like some cellulitis from the extreme swelling due to immobility. I have custom wraps for them, but it happens anyway. Maybe the infection from the UTI has something to do with it?

Then the continuous pain...:eek:...it never stops. Now with the huge snowstorm on the way, the barometer is falling and every nerve ending is screaming/burning/hurting. Just another day with SPMS -- are we having fun yet???:grouphug:

Amen Judy, I'm with you all the way.

So sorry for your pain. :hug::hug:

This is anything but fun. Sorry that Sx's are ganging up on you Judy.

Some joggers just ran by my house in their parkas and toques. It is -20F and dark outside, yet there they are...all fit as fiddles and ramping it up a notch. Something in me wanted to get up up from my chair, go outside, make a snow ball and throw it at them :D.

With love, Erika

Or they all jogged by your house and a pile
of snow from your roof fell on them!!:yahoo:

PP for years ...
 

I'm new to this PP/SP group. I look forward to meeting you.

We're pretty much in the minority, aren't we? I bet among us though, we cover a bunch of MS symptoms and experiences!

msbluis
(Ms Blue Eyes)
[FONT="Tahoma"][B][SIZE="3"]

Hi msbluis. I'm PP too. This thread's been pretty quiet for a while, but maybe your post will bring folks out. Anyway, nice to meet you!

Rant away, Judy2!
 

Hi Judy,

Is it ok to call you Judy instead of Judy2? Or maybe JudyToo... sorry, my poor sense of humor.:rolleyes: By the way, that's a cute avatar. Is it your baby?

I'm new here, but not new to MS. Your post mentioned a catheter. Is your cath an in-dwelling Foley or do you self-cath? I've been lucky in that I haven't had many UTI's, but I understand what they're like. Not fun. I self-cathed for 2-3 years which made it SO much easier to go to dinner, shopping or a movie without having to scout out the nearest restroom. Since 2010 I've had an SP cath. (suprapubic) It has worked well for me.

For years I, too dealt with grossly swollen toes, feet and ankles. Once I could no longer walk at all due to the MS - about 10-12 years ago, the swelling began. Before that I normally wore a size 9 1/2 women's shoe, but it got so bad that I had to get a men's size 13(!!) house shoe.

A few years ago I began sleeping on my back with a wedge under my lower legs/feet. The swelling went down quite a bit. Then I changed to eating just one healthy meal per day ... a few months later with the resulting loss of weight, the rest of the swelling left. Yippee!

Let me know if I can answer any questions. If you have any MS symptoms with areas below your neck, I may have dealt with them myself over the past PPMS years.

Good luck to you, Judy2. I'll be thinking of you.

Karen
msbluis