You guys are so tough I admire you all. I have a b12 deficiency and MS like symptoms and thought I had MS until I got everything checked and tracked down my Ulcerative Colitis and b12 issues. I have some permanent damage but can deal with it since it is stable and really nowhere anything like your issues in severity. I am almost embarassed to even be a member here at this point as i feel not worthy.

I remember how scared I was and reading your posts has me awestruck at your calm and strength dealing with your issues. You are truly an inspiration for me.

My mother was in a nursing home years ago and her roomate had MS and I learned a lot about it as a teenager there. God bless all of you.

My head is filled with fairyfloss (cotton candy) I know that my thoughts are there, but when I try to grab them they are gone - just disappeared, my legs are filled with concrete and my feet are filled with hot coals at night and .....other parts of me feel like I have a cattle prod implanted.

Added to that, every afternoon fatigue hits and someone lets my tyres down and the road feels so much rougher.

I am not always like this - this is how I feel on a bad day.

Lyn

Sally, I love that quote "other than that, how did you like the play, Mrs. Lincoln?"

I too have had whatever I have in active form since 17, with a few preliminary attacks such as the one at 11 when I had poor eye-hand coordination and exhaustion which no one believed I really had....a precursor to years of the same later. I have been dx'd with MS, Porphyria, Polycythemia Vera, and Monoclonal Gammopathy. I may have them all. Porphyria has so many neuro symptoms like MS that it's hard to tell them apart, and I do have the brain lesions found on MRI a quarter century ago when I got MS diagnosis--about 25 years ago, too tired to count the years.
It's been a long life, Sally, for me too, and I'm wishing to go "Home".

Mariel

It has helped me to read all of these descriptions, to revisit some of my own neuro symptoms, since I am focused more (too much) on my rare blood diseases these days,
which add to the foot neuropathy very badly.

It seems many of you---almost all of you--have the same acute and occasionally stabbing pain, as well as numbness (how to have both stabbing pain and numbness) that I have. Mine is primarily in my feet. It seems to be a combination of neuropathy and
erythromelalgia, a condition where the microvascular things in the extremities get clogged with too much blood or too sticky blood or too thick blood (doctors seem vague on what this is). If I take Interferon chemotherapy, the feet improve a lot, but the INF
has horrible side effects....absolutely awful.

I also have had loss of balance, but it helps to do Balance PT, which I am again involved in now....PT always provides help for me even where I thought it impossible. My balance
was pretty good most of my life but now it's much less good, so I have to be careful.
Again, I do not know which of my diseases causes the imbalance...maybe all of them.

Spasticity, which a few of you described, is my most characteristic response to a drug or
food which is bad for me--which may be primarily a Porphyria sensitivity rather than MS.
I get very spastic, too, if I don't have enough magnesium and calcium in my diet, and B1
helps too. I got so spastic on one drug, an antibiotic which I forget the name of, that I could not walk around a corner and I lost all color vision.

I had a long period of eye trouble but it is mostly gone now, for many years. things have changed and morphed a lot for me. Like Sally, I have had MS and or the "other thing" for way over 50 years, and I am plumb sick of the whole thing. But I have enough good food (Swank diet) and warm house and occasionally see my grandkids, and have hope in God, so I am ready for the last lap (but wish I didn't have to take it).

We all have to take that last lap, Mariel, but I feel that we may not have to spend as much time in purgatory and swoosh right into heaven..:D :hug:

Good thought, Sally! And those are beautiful May flowers.
Today my neighbor brought some plants to put in my long
planter in front of the house. I have not been filling it with
flowers, even though I'd like to, because it's one more journey
to take with my sore feet, to go buy the plants, get them in
and out of the car, dig up the dirt, and put in the plants. My
neighbor started the planter and says she will get more plants
for me every time she buys for herself...and she buys lots.