Tom,
Your story went straight to my heart. At 46 I was Diagnosed with Primary Progressive Multiple Sclerosis (PPMS). I am now 54, in a chair the last year and half. Sometimes it is overwhelming, I remember how it used to be and realize now that's changed. But I know I can't leave, I still have stuff to do for/with my husband and kids. Yes it sucks but it is what it is. Don't try to predict your future (chair, etc,), no one can, not even the best neurologist. One day at a time.

Hello, Kicker: Thanks for your message. Well, that is the first time I ever heard of PPMS, so I thank you for telling me something I needed to know.

One of the maddening things about neuro diseases is that so little is understood about where they "are" and where they "are going." No wonder the dxs are so vague, based as they are on elimination. Let me note that at 54, you still have much of your life in front of you; consequently, I find your attitude to be more than just appropriate: it is essential. At 66, objectively speaking, I'm facing a different situation.

Your note on "One day at a time" resonated. The best advice I got so far came a year ago from my brother, a retired neurosurgeon. "Sometimes you have to just put one foot in front of the other." The problem is, as time passes and my condition worsens, one foot -- the right one -- seems to have other ideas.

Welcome to NT

This is a great place for support and information.

We do support each other. We understand here at NT.

Never give up.

I met a lady in a nautropathic treatment setting who had been in a bad motorcycle accident. She has actually been to India and had embryonic stem cell treatments. She can walk now. They're doing amazing things with stem cells. I hear there's a lady in the UK who has donated 15.4 million to a research center for MS and other neurological disorders. She's the Harry Potter author.

Here's a wikipedia if you care to read. Although it seems she's not in harmony with the organization.

My hats off to her for the heart she has. I know she's "Harry Potter R$ICH" and that's what makes her even more special.

http://en.wikipedia.org/wiki/J._K._Rowling

Let's keep thinking positive for the research and developments.

We just have to do what we have to do for now.

I hope you get some answers real soon. It helps to understand why.

Learning how to get diagnosed properly and then get treated takes lots of work!
IT IS SCARY AS HECK! You can lose your appetite during the 'process' thru worry. BUT DON'T!
Do NOT expect the absolute worst of what you may fear. Honestly it mite be something else from out in left field such as I got? [CIDP, and acquired auto-immune disease following a long flu/pneumonia bout-not a hereditary issue at all!] THEN? I got other things, such as cancer and a few other issues. Nothing, no problem after the first one! But after the fourth? Enuf.
Take a look please at this site? http://www.neuroexam.com/content.php?p=2 Then go from there? Get a handle on what the docs are looking for? It mite not be 'hoofbeats'...ergo horses? In your case it mite not be polio related? It could be a zebra in disguise... a different kind of neuro issue, that many live with and deal with.
It could be merely 'spinal'? Or, compression of nerves or auto-immune [what I have] But many here, are all kind, understanding and KNOW what you mean about the pain! I describe it as 'I don't have the energy to cry, and it doesn't do anything anyhow' at times. True- tests, take time and the results are often 'interpreted' differently? But as long as you've got a brain and the gumption? USE THEM! There have GOT to be docs out there in the world who can help YOU! Thing is? To FIND THEM! BTW? I found mine.
Don't know about you? I don't 'bounce' anymore! When I fall? I break. Isn't fun. But? I keep getting up and walk again! Even when I'm not expected to. WHY? Because I want to prove 'em wrong! I and YOU are stronger and smarter than 'they' are! So get to work! Hugs and hope... !!!!'s Truly - j

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number of fellow members here to assist as possible and looks like Alffe has given you some forums to get started. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

A good friend of over 30 years said to me when I told him my diagnosis "you're still you, aren't you". So I try to be.

Spoken with a clearer voice and softer spirit, you have opened my eyes to still another means to help others. We still are. We still are. Just the other night I shared on another thread with one who, being stricken, needs to know it is OK to cry needed to read, let yourself be human.

As we each remain committed to one another and to our beyond cyber families and friends, we can reach beyond ourselves to share, to be there. Lebelvedere, I am glad you are here among us, for being only human with your DX, you can be THERE for others. I am, despite having lost the tremendous strength of my "athletic" body to a car wreck 5 1/2 years ago. Next week, I am allowed to speak in front of a chronic pain group here in Colorado; how I wish you could be there so I could shake your hand.

Hang around. You have purpose. OK?
Caring,
Mark56

Hello, Dahlek: Thanks for your information and comment. I am resigned now to never having a clearcut diagnosis; rather, I will be sent from doctor to doctor and take test after test, with nothing conclusive being shown at the end. In the meantime, my condition will go from bad to worse. Fate may surprise me, but, again, I doubt it. There seem to be too many things that are not well understood about neuro diseases at present; someday, they will be, but not in my time. So that is what, in your terms, my brain and gumption are telling me. My intuition, which may be wrong, is in play; after all is said and done, all the information and facts and conversations and tests are over, intuition is what remains. I'd like to be optimistic. There is a certain point, however, at which even hope -- the only item that did not escape Pandora's box -- escapes, flies away, never to be seen again.

I can totally relate to where you're at. For 12 years I have been plagued with chronic back pain and it just keeps getting worse. Unable to obtain a clear diagnostic picture and hence treatment, I am fighting off suicidal thoughts all of the time. I will be 50 in December. I feel like giving up. I have a great wife and 20 year old twins. They are the only thing keeping me from going through with it. At least I now found this forum where I can talk to others who are capable of genuine empathy. So, you are in good company here I think...

Hello, Surfer: 12 years of chronic pain? Without a clear dx and treatment? No wonder you struggle against suicidal thoughts "all of the time." But you have your family to sustain you. They are the key; don't lose it or minimize it. This forum, as well.

I don't mind saying that a few months ago, I arbitrarily set today, Sept. 9, as D-Day. I could not see myself going past today; well, here I am, but just barely. We went to the market this a.m. for 2 hours; I felt like I would faint, very weak, the sun was too much, tired, tired, tired. However, I didn't fall on my face or get in a wreck coming home. I'm approaching a major threshold, I sense.

Would I have gone through with my plan had I not contacted Neurotalk? I'll never know for sure. However, I do know that it certainly would have been more likely.

Surfer, Waves... we'll have to get you two together.

Tom