Poochie, I can identify somewhat. What used to be mild prickling all over has gradually graduated to what now feels more like stabbing and causes jerking in whatever area it happens. I also experience painful muscle spasms in my lower back where the muscles are weak from surgery. ALL of this pain keeps me from sleeping. It is very depressing and just doesn't give a lot of hope for the future. This pain and exhaustion is why I haven't been on NT much at all lately.
But I miss you all and luv you.
I hope you find the answers you are looking for Poochie.
And a to the rest of my friends!

Hi Poochie! Yes, I live with constant pain 24/7 due to this miserable disease. I HATE IT!!! Today has been an especially bad "pain day" and then depression comes along with it. I was diagnosed in 1990, same year I was divorced, so have dealt with it totally alone. Didn't have pain for about five years, then started with a pain in the right buttocks -- a literal "pain in the butt"! Since then it's gone on to affect my entire body.

The doctors first thought I had developed fibromyalgia because of the all over pain, but now I'm not so sure because it's a nerve pain, burning, sharp, stabbing, and not in the muscle itself. I'm now considered secondary progressive and am in a chair since my legs don't listen to me anymore. Your neuro would have to diagnose what stage you're in and if it's progressed. I am able to stand up for a couple minutes at a time while hanging on for dear life -- balance is shot -- but I still live alone with help cleaning, etc.

I'm also on LDN after trying Beta, Avonex and Novantrone with horrible results. It, plus two Aleve daily seem to help the most and usually takes the edge off the pain. Tizanidine for spasms and sometimes Carbamazipine for pain also. Meds for bladder issues, depression, mitral valve prolapse and Atrial fibrillation round out my daily "cocktail". Oh yes, omeprizole too so I don't get ulcers from all of the above!

Guess we just deal with the hand we've been given and try to make the best of it, although sometimes it's sure difficult! Neuopathy in my feet along with lymphedema from immobility is painful too and makes wearing shoes or anything confining on my feet like socks, impossible. As "Friend" said, it does wear you down after awhile, but then a good day (relatively speaking) comes along -- the sun shines and things don't seem quite so bad.

Hang in there and if you ever want to PM me, feel free. Sometimes knowing someone else is dealing with the same things helps a little. Take care.

Yes, pain is part of life here too. I had right leg numbness that was substituted with pain as feeling came back. My neuro spec won't admit that pain could be part of my disease. Nor is my confusion, inattention, weakness, facial weakness or sensory problems come to that.

Feel better.

and JackD, thanks (not) for the 10 year life map. I really hate the '10 year prognosis' thing. It weighs heavy on me every time I see it.

Thank you so much, I know I'm not alone, although I hate it that you are with me on this, tomorrow I will have 3 grandchildren, they are like a happy pill, hopefully they will take my mind off this horrible disease. I have to remind myself that it could be worse and I just have to deal with it today, tomorrow will take care of itself. Thank you all.

hugss Poochie from here too...

I am undx, but lots of MS like symptoms..

I am on neurontin for nerve pain and it helps.. but this is nerve pain like numbness/tingling pain.

I am on baclofen for stiffness/spasms

I am tired of the pain that I do have, and also hate being on meds...
'
wishing you better luck with less pain... might mean some progression but hard to know... as like many here have said they may have dealt with pain thru out... and here I am with painful days without even a diagnosis...

hugsss and we understand, sarah