Hello, my name is Tom, and I am a proud new member of Neurotalk. I am 66years old. I used to be very active physically, in superb condition; for over a decade, 1989-2002, I worked out religiously in a gym for 3 hours, 3 days per week under the guidance of a former Olympic coach. One hour or so with weights (not heavy -- light, with repetitions), the rest with stretching. I felt great. Before that, from 1974-1986, I jogged 3 1/2 miles, 3 times per week. Terrible pains in the back of my knees forced me to stop. I learned some stretching exercises; the pain went away.

Around 2002, after coming home from the gym, I started having strange pains and weaknesses in my legs (they would suddenly start to double up; I never fell, but came close). I had polio at the age of 8, and spent a month in the hospital -- and years doing physcial rehab. I lived a very normal life. So, I figured I had post polio syndrome, and stopped the gym.

Weakness in both legs; incredible stiffness in the morning; tripping on carpets; difficulty swallowing -- all the usual stuff. My condition worsened. I am now essentially house-bound. Sure, I can go to the supermarket, etc., but I pay a terrible price at night, stiffness, soreness. I have all the classic symptoms of PPS, but also of ALS and others as well. I can't walk to the end of the street without being out of breath. Climbing stairs, well, I have to concentrate on what I'm doing.

I have seen three doctors, including a neurologist who gave me an EMG, and told me that he doesn't know what I have -- but that I have something serious. He is referring me to a rare disease specialist. He also put me on lyrica, which has masked 60% of the pain in my legs, but makes me feel exhausted. I live on the usual over-the-counter pain killers.

I attempted to take my life last year (overdose of StilNox, ambien) because I could feel my body being "boarded up." Beside an intermittent, bad burning pain in my right ankle, I have (sometimes) pains in the center of the palms of my hands: they are definitely neurological and surprised even the neurologist.

Whatever I have, I sense now that it cannot be cured, that I will be in a wheelchair in a few months. For a polio survivor, there is no worse outcome than to be handicapped and become a public charge. Thus, I would describe my present state of mind as a mixture of terror and resignation.

I caught myself last night thinking, "Thank God, there's death." I sense the end is approaching, and that there is no hope for me. Best to get it over with quickly.

My question to all of you out there: they say many diseases mimic PPS and ALS. What, specifically, are those diseases? Thanks ever so much for any information you can supply.

Hi Tom and welcome to NeuroTalk. I am so sorry that your health has deteriorated so and that you have yet to get a dx. As you can see there are many forums of interest here..and you will find this a great place to make friends and share information.

I mostly frequent the Survivors of Suicide forum..our only son killed himself about twenty years ago and it just about destroyed our entire family so please don't even consider that as an option..people who love you will be forever changed. I know that you want the pain the end...not your life.

ALS, PPS, MS....check out the forums.

http://neurotalk.psychcentral.com/thread112688.html

http://neurotalk.psychcentral.com/forum17.html

http://neurotalk.psychcentral.com/forum2.html

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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.

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.

Hello, Allfe: Thanks for your comment. My heart goes out to you regarding the loss of your son. I do not have children; however, I cannot imagine a greater loss to any parent than that of a child.

I understand your approach of trying to dissuade people from taking their own lives; I would do no less if I were in your shoes. However, as my physical condition worsens and I am determined not to be a burden either to my family in particular or society in general, I become more and more convinced that death can in truth be a solution -- at least to certain, very special problems. I should note that last year I contacted two Swiss organizations, Dignitas and Exit, to no avail; both deal with cases such as mine. I would certainly like to take my life in a way that is not dangerous to myself or others, and have something in mind.

Darkness is setting in, along with profound sadness -- something beyond depression ("melancholia," perhaps). Again, more and more, I see no way out.