[ms er since '06]

Originally Posted by kicker

We have 2 dogs, neither a working dog, just mutts from the pound but both would do what they could in a situation. I do love them both, I'm never alone. I always carry my cell phone to call the EMTs when I've fallen and can't get up. I can be sort of dignified with them in my underwear when needed. If I couldn't laugh, I'd always be crying. MS sucks no matter what kind.

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.

[AstaireGal]

Originally Posted by ms er since '06

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.

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!

[kicker]

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.

[ms er since '06]

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.

[AstaireGal]

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!

[AstaireGal]

Originally Posted by ms er since '06

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.

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.

[AstaireGal]

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?

[Kitty]

Hi and welcome to the MS forum.

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.

[agate]

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.

[AstaireGal]

Originally Posted by agate

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.

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?