[Gertrude]

Originally Posted by Chemar

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

I'm only interested in hearing from others with PPMS.

[Koala77]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

Although you say you're not interested in hearing from anyone who doesn't have PPMS and although we do not differentiate between those with PPMS and those with SPMS in this thread, I'm sure our members with PPMS would be happy to help you if they knew what you wanted.

I personally do not have PPMS but other members do, and although you only want to communicate with other PPMSers, we MSers with RRMS and SPMS might still be able to help you out with with symptoms that we've gone through ourselves over the past 20 or 30 years. You never know!

May I suggest that you give us a little more information about yourself? There are a number of us in your age group and older, and some of us have been diagnosed for many decades. I was diagnosed in 1977 and there are others who precede me.

[Snoopy]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

Hello Gertrude and welcome to NeuroTalk.

Although I do not have PPMS I am 50 years old and have been diagnosed for 26 years with symptoms that go back to childhood. As has been mentioned we do have members with PPMS but it doesn't matter what type of MS you may have many of us share the same symptoms.

[Aarcyn]

Originally Posted by Gertrude

I'm only interested in hearing from others with PPMS.

I was dx'd in 2005 and have PPMS. Is there something I can do for you?

[kicker]

Some of my best Board buds don't have PPMS. MS is so weird. Some PPMSers (some) are way different from me like RRMSers (some) are.

Wheelchair Kamikaze(Marcstck) is a PPMSer who writes a blog (love it - funny, informative on so many MS issues. Another PPMSer writes a blog and I often don't relate to it). But they are not 100% sure Marc has PPMS, they say Maybe it's something else, not that we know what. So I often use symtoms as what works for me. Koala and Salpal don't have PPMS, don't tell them I said this, but both are really OK (I hate saying nice things!). AARCYN is PPMS and we have an e-mail relationship but are more similar as Moms than PPMSers. My point is no matter what your MS title, everyone is so different from each other. I think with other's help, I started this thread hoping some PPMSers would present some answers. The answer was there are no answers. One of my favorite board buds was a Tourette's person who liked the MS posters (we are a fun group)(wasn't Who Moi great?). And Neuronixed Craig , He's not an MSer but is one of our own anyway. For so much stuff, his is a voice of knowledge to listen to. I can't walk but have minimal pain and seem ok cognitively. Others can walk but have burning and numbness (which I've never had).

[SallyC]

Maybe Gerty just doesn't like us, I'm SPMS and I'm hurt. Not really-just kidding.

[kicker]

I re-read thread. We are goofy, but really good stuff gets said, then we're goofy, then really good stuff gets expressed. What's not to like?

[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.