Dear Tom, your post was good. Sometimes there is a point where you say enough already. I turned down a few tests too. I am labled non-cooperative patient somewhere in my records. I hope this day finds you in less pain. ginnie

Sometimes people are not given all the information on compassionate organizations, or there is a mis-truth being passed about. The group I belong to is about living well while we can. They present the newest advances info on MS, PN,. The organization put out a fantastic letter this month entitled Palliation, research is given on prostrate cancer,melanoma trial results, ms about "gilena" findings, melanoma and braf-.canabinoids in lateral sclerosis, cronic fatique and virus clues. All this from an organization that is associated only with end of life issues. That is far from the truth. I did look into most of the groups in the world. I joined this particular one over a decade ago. I intend to live a long, and as comfortable life as I can. I will be here many years if I have my say. Yet I wanted assurances, more information, more compassion. Read this months issue of Final Exit. It has good people in this organization also, or I would not have joined. What is different, is that you can really say whats on your mind and somebody listens. ginnie I do not encourage endings, but learning, and ending my own fears. I am not real big on prolonged sufferings. I do have advanced directives legally in place too.

Thinking of you, too -- all of you.

Some answers: yes, Gougerot Syndrome is an autoimmune disease. Yes, it is the same as Sjogren's Syndrome (as far as I can tell).

A neurosurgeon looked over my tests. He thinks that the pain in my legs may be due to a vertebra pushing on the spinal column. He gave me some exercises to do, which definitely are helping. I have been off Lyrica for 2-3 weeks now, with some slight pain, but nothing like before. I hear nerve tissue repairs itself slowly; maybe that is what is happening.

I walk a dog for 40 minutes or so; feel dead tired at the end, have to lie down and take aspirin. We'll see if it gets better with time.

I wish all of you the very, very, VERY best. Now, I gotta go do my taxes ... now, that's real pain for you.

Tom

Thank you, Tom, for writing such good news..... it seemed a message with tinges of HOPE around the edges. Very good news indeed!

Now about those pesky taxes....... a necessary and onerous burden, but through this the government continues to function. Our son, an Army man, and his family thank you.

Peace unto you,
Mark56

Oh my gosh! I think I hear hope and alleviation of pain going on here! This is wonderful news. Thanks for checking in Tom!

Hi Tom

i've been working (after long time unemployment) and haven't checked into this forum for a long time...

i just read the last few posts on this thread ('fraid i haven't gone through the whole thing) but...

Wow, i am so glad to hear news that you are in less pain!!!!!!! wowwwww!!!! i am very happy for you!

~ waves ~

Good to hear from you, Waves, plus everybody else. Just a quick note. I have been off Lyrica for about 6 weeks with no noticeable pain. Nerves can, I am told, fix themselves, but it takes a while. I would suggest that anybody on Lyrica seriously consider getting off the stuff -- see what happens. It could be you don't really need it any longer.

Tom

Doc kept telling me, a millimeter a day, give it a year, regrowth slow but sure, and that is absolutely correct for some folks. I am thrilled it was the case for you!!!!!! Well and truly!! For me, well, I think my nano electricians went on strike or something, or they weren't very good at the job, or they hooked the nerves to something else [like my garage door opener]........

Anyway, I would up having to have Spinal Cord Stimulation surgery to finally gain REAL pain management over my whacked out lower body nerves, AND it worked. Pretty darn good, too! I tell folks I am blessed, because I no longer take any pain management meds..... not one pill, drop, injection or anything, and I refuse to go to the local dispensary [In Colorado, that is legal speak for making a purchase of Mary Jane based on a prescription- how the legislature got that one through is anyone's guess, but I reckon they were given free samples on the day of the vote on that bill]. So, the hippies of the 70s finally got their way in Colorado. Hoo Hah. It is funny, though, if you drop by some of the dispensary places, you can also see the folks whose teeth are black from their meth approach as well..... must be a real pain management issue for them.

I kinda like kicking the habit myself, so with doc's advice and management, I did withdraw from all pain management prescriptions once my SCS was up and running and doing well.

Sign me, Thrilled in Colorado,
Mark56

((Tom and Mark)) that is the most wonderful news!