I guess it's like going off yer meds cold turkey! Truly, one tends to go: OFF DA WALL! ..and bounce a few times? Ever see a CAT OD..sort of on Catnip? The Z D & T's are amazing [zips, dash, tears]!

Kell, Are things working a trifle better for you? I've had all kinds of good and bad scenarios running thru my furry brain. You don't WANT to know what's happened to me...I started a printout list of events in the last few mo's for my neuro appt. in a couple weeks...The 'Stressors' List, now I look at it, seems to indicate that:Gee given all that, you SHOULD BE NUTSO! I am not YET, nor do I intend to be. Kell, I think I follow your example, after all, you are still typing in complete sentences! Bravo!

I've learned that post-cancer meds along with my neuro meds can probably cause 'dry mouth' which in turn is turning my teeth to trailer-trash[not to mention PC meds can make you VERRY anxious], that the same meds combo is probably aggravating border osteo-to full osteo. That I cannot do the 'simple Curves' workout w/out spraining/straining or breaking something - & this is a workout for wimps [yeah, in a prior lifetime] I've also learned that those med-compatability charts do NOT take into consideration the #'s of meds to create disastrous, amplified side effects. What? only one in 10,000 people are on THAT combo? not in 'puter.. There are no GHOSTBUSTERS to Call! So, I like all of you good, no great people...slog on...trying to make do with the world as it is. Further, what are/were the odds of us getting our PN's? Odds on odds, well, I wouldn't want to bet on it all! Fuzzies in heaps to all! for now...lots more to come! - j

Hey toots!!!

There's a new product out by Biotene. It's a dry mouth toothpaste.
I bought some yesterday at CVS for my Alan.

Don't know if you've heard of it. Probably you have but I just wanted to share.

Take care,
melody

John,

You have our deep and abiding gratitude. Thanks for your efforts, initiative, and generous soul for setting this up for us.

The bad news is, "Do somebody a favor and it becomes your job."

Just saying hi to all of you nice folks here!

Cara

Very gald to find this forum. I am not certain but it was very difficult for me to locate this forum. I wonder about the other aussies, and if they are having any troubles. SO nice to be here!!!!

If you look closely, there's a something missing from my name here compared to the old one at BrainTalk. And it's a good thing.

So glad you found a way to get here, Missed you all!

OK Steve, I'll rise to your 'bait', what's HAPPENED? Don't leave us in suspense, after all, the change indicates something GOOD going on and we all can use as much GOOD NEWS as we can find.

Out with it. - j

Well, I'm almost all better! Not entirely, and not without setbacks, but close enough.

I found great help moving away from the "diagnosing" professions like neurology to the treatment-focused professions like physiatry, PT and even TMJ dentistry.

The neurologists stuck very close to the evidence-based research reported on drug-company-funded clinical trials. And there's a lot that those trails do not even study. So I got a lot of blank looks from neurologists.

But when I went to the physiatrists, specialized PT folks and specialized TMJ folks, I heard something unexpected: "Oh, yeah. We see stuff like this all the time. There's not much research, but it's starting."

So, I apparently had a syndrome that involves both nerves and muscles. Nerves overstimulate the muscles (I had fasciculations and many, many trigger points), while muscles (and their effects, like bad posture, tight cervical spine, elevated first rib, etc.) irritate the nerves.

It's a chicken-and-egg question, which comes first. There's a theory it comes from neurotransmitter imbalances in the brain; another suggests an autoimmune attack that goes after potassium channels in nerves (the nerves' "off" switch); and underneath it all are typical musculoskeletal irritants like bad posture, weightlifting, computer use and so on. It apparently also leads to early central sensitization, causing strange referred pain syndromes. The first PT told me she has seen people who get leg pain from manipulation of their jaw muscles, even though this makes no physiological sense at all. She also said that without intervention, this can lead to things like full-blown TOS or RSD.

In my case, a physiatrist told me my adverse reaction to Levaquin years ago may have predisposed me to systemic reactions like this.

Anyway, did at lot of work with PT, dentists, trigger point release, biofeedback, and stuff I can't even remember. I remember the first trigger point session I had. My arms had been so sensitive it was hard to wear sleeves or put my arms on armrests or a bed. Riding home, they still hurt but there was a very strange change in the sensation--like it was breaking up into separate pieces, if that made sense. Over time, I got better, and my last physical therapy session really reduced the holding-a-red-hot-cactus sensation in my hands that made it almost impossible to use a PC.

End of story: I got better! I'm almost back to normal, with some setbacks now and then. Now I have to pick up my business, which suffered under neglect (anybody need a high-priced marketing copywriter ?), but I'm very happy about my health.

I've been meaning to share this, because I've noticed some people on this boards with patterns that strongly suggest a syndrome similar to mine, and I just wanted to pass along the good news.

Well, that was kind of long, but that's my story!

I am very happy to hear you have been doing so well. I don't have the medical knowledge that alot have on the forum, and as such had to read your post 3 times .

But what I did get is that you have found a large degree of recovery through PT. Regardless you have found relief,and you sound like a new person.

One of the things that I don't like is that all those wonderful archives and old posts are not available anymore, either temp or perm.

But from memory, did you not have a fully body syndrome somewhat like myself and glenntaj?

May I also ask what the PT entailed?

Once again, I am very very happy to here you are doing so well.

Still is a mystery.
You had a nice lenthy post there, and I'm gald you're feeling better...........but
WHAT'S MISSING (?) (from your name)