[Gertrude]

I wonder if others with this condition have as hard a time to move their bodies out the bed or chair as I do. I feel like I am wrapped up in a space suit made out of heavy lead and I can't move very well...my right leg is always stiff and I get that 'drop foot' when I try to walk like I used to. I have had no one to talk to and I am not a fan of the computer. I hope to get a real PT soon. I've gone through countless chiropractors and massage therapists. I finally found one doctor who begged me to see a neurologists (for the second time) and I got diagnosed. My body is always tight and stiff all over. I'm worried I won't make it to retirement...I'm 55.

[Aarcyn]

Originally Posted by Gertrude

I wonder if others with this condition have as hard a time to move their bodies out the bed or chair as I do. I feel like I am wrapped up in a space suit made out of heavy lead and I can't move very well...my right leg is always stiff and I get that 'drop foot' when I try to walk like I used to. I have had no one to talk to and I am not a fan of the computer. I hope to get a real PT soon. I've gone through countless chiropractors and massage therapists. I finally found one doctor who begged me to see a neurologists (for the second time) and I got diagnosed. My body is always tight and stiff all over. I'm worried I won't make it to retirement...I'm 55.

The answer is yes, I have symptoms similar to you. Because it is progressive, I know it will not be better but I just hope it stays the same. My progression has been relatively slow but if I think back to 2005 when I finally had to go to the doctor and find out why my body was acting that way, I was so much better then than I am now.

I did PT and have massages upon occasion.

Getting in/out of bed, chairs is more and more difficult. It is depressing. I have plenty of "discussions" with my psychiatrist about my supposed acute depression. I think he is wrong about my dark perspective, I believe I have a perfect right to be sad/mad.

Over the past years though, I just struggle to get up and just keep doing what I do. I use a rollator (PT had recommended it). I do whatever it takes.

Am I happy? Yes and no. I just deal with it, like you do even if our future is not nearly what I had thought it would be. I envy my neighbor, a 76 year old woman who walks every morning and does her church stuff, etc.

I keep most of my dark thoughts to myself. Saying it aloud to most people puts an awkward spin on any relationship.

In this forum, I have found a few people that I talk to that really understand so I can vent here.

I hope that helps...a little. I am toying with the thought of getting a working dog. The mutual help/responsibility may improve my life.

My only problem is that I want to just be given the dog and not do the research needed to get the help!

[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.

[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]

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.