toddm1960

I held off responding to this thread because I may be one of the few taking a large dose per day. Two of the neuros I see have me on 1,600 mg per day. It doesn't bring me back to normal, but when I had to stop taking it for a month before some tests.......wow. My energy level dropped to about one spoon for the day....LOL. Good luck with it I hope it helps you.

I'm right there with you Cat Lady, it's a different pain in my bones and all of my joints. Elbows and knees are sore to touch. Nothing seems to help it, most of my doctors chalk it up to another crazy POTS thing.

Great health care system we have huh....................

I have the same problem, for over 2 years now I've taken 50,000 IU three times a week. My levels still today aren't at the lower end of the scale.

Two days of testing, metabolic tests, spinal tap and a muscle biopsy. It will take about 8 weeks to get the results, and then from there to see if I qualify for any of his research studies. So it's back to waiting.........

A close goodmorning to Firewatcher & Mack's Mom, it's been very nice here in Atlanta....sorry I brought the New York rain with me. FW Dr. Schoffner is with Medical Neurogenetics, Nothern Atlanta.

Shell have you thought to go to another genesist that does except medicare and have your blood work or muscle biopsy sent out to his research lab. He takes in samples from all over the world.

I think Erik hit the nail on the head........it would help half of us, and make the other half worse. It's been 30 years since I have smoked, I wouldn't have a clue of how to get it now........lol. Oh well I guess it's always something.

I'm a 49 year old male, very slow transit time and eshphageal and gastric spasms. I have terrible cramping and stomach pain. Just wanted you to have one non "it's a female issue" vote.

For the mitochondrial disorders, improving this function should improve thr ANS disfunction.

I have the tingling burning lips and mouth, also the metal taste. I started on 400mg twice a day of B1 and haven't had it since. Now I hate to say anything is a direct relationship for us with ANS problems, but this has seemed to work for me for the past 4 months. Crossing my fingers it's stays this way. Good luck, and let know if you find something that works for you.

Dr. Schoffner doesn't treat dysautonomia, he's mitochondrial testing. I was very surspised to learn during my office visit he has a compound (that's all he would call it) that he's looking to get FDA approval for a research study on. Had my muscle biopsy and spinal tap today, I'll know in two months if I qualify for the study. His theory is if he can fix or help the mitochondrial problem, the dysautonomia will follow, again that's only if a mitochondrial problem is the root cause of our dysautonomia.

The sub set he spoke to was in the cause of our dysautonomia, the ANS disruption could cover all types of dysautonomia. Mitochondrial disorders are only one of the possible causes, what lead me down this path was over whelming exhaustion, and muscle fatigue after very limited activity. I'm orthostatic hypertensive, stomach pooler, HR increases around 50 BPM and my pulse preassure narrows to around 15 when standing. Has anyone else seen Dr. Schoffner?

Met with Dr. Schoffner today.........wow. There's alot going on with mitochondrial research as it effects dysautonomia. Dr. Schoffner has dicovered a new compound he's looking to get FDA approval for to correct specific mitochondrial disorders. Tomorrow I'll have the muscle biopsy to confirm if I have the varient, he feels there may a sub group of us with this cause for our dysautonomia. It's two months to get these results back, so like all things.........hurry up and wait.

I'm here in Atlanta to see Dr Shoffner, testing for the next three days, wish me luck. I'll let you know how everything's going.

Great follow up........I had been an athlete all of my life. Went to college on a baseball scholarship, and was hooked on lifting weights and lived a totaly healthy life style. I became a personal trainer as well as working a full time job, I was very in tuned with my body. When this hit I knew it wasn't in my head. Just because a doctor couldn't find it didn't mean it wasn't real. I guess I never second guessed myself. I still dream of the day when I can workout and feel that wonderful burn of lifting or running..........someday.

Short and sweet version, I saw 27 doctors over 3 years. Each time they either said "I have o idea what's wrong with you" or "it's all in your head" I would fire them and move on to another. Researching on the internet I found dysautonomia could be my problem and a TTT could dx it. I asked my neuro to find a doctor that could give me one, and bingo.....sure enough. My guess is 90% of us on here have dx ourselves.

90% of doctors today are clueless, don't waste your limited engery. Fire them on the spot and look for another who knows about this or is willing to learn with you. It's taken me 27 doctors and three and half years to get dx'ed, and I still don't have a doctor that knows how to treat me.

Right after I eat or when I'm active ( up and walking around ) I'm very bloated in the upper area around where our stomach is.

I have an overactive sympathetic response, I'm orthostatic hypertensive. That's as indepth as my dx has been so far, but i had to ask to have a TTT and search out where to get one so it's more answsers than some get.

When I get these internal tremors I can't walk, all I can do is lay down. It's like every cell is shaking, and they happen at anytime of day. My neuro was at a lose as to why, but I'll ask about seizures now.

Sounds like a flushing episode to me, I have them so often now I don't even think twice about them. I just know to sit or lay down, get something to drink and relax.

I've seen 27 doctors over 4 years to finally have to request to have a tilt table to dx myself. I'd fire that doctor and move on to someone who's willing to help. Many of you have had good with doctors, but my experience is that only 10% of doctors are worth seeing. Sorry to be so hard on this but after 4 years of being told you're making too much of this, you need just cope with what going on, or my favorate you need to stop chasing this dx and wasting money, no wonder health care costs are out of sight. These doctors are not worth our limited energy.

When I have my internal tremor events I'll have the same thing. I have to urinate so bad, I'll get up and walk hands on knees to the bathroom. Go for what seems like forever, get back into bed only to have the same feeling like I haven't gone for hours. While the event lasts I'll go like this 5 or 6 times in an hour. It's crazy, no one has been able to explain this one, after the event or flair is done it's back to normal.

I'm orthostatic hypertensive and I have extrem exhaustion, my doctors tried Ritalin and all it did was make me very jittery and shaky. When my stomach can take it I use small amounts of coffee in the morning or afternoon, by the way I'm a lunchtime napper also. It's the only way I can make it through afternoons at work. Try new meds when you have some time away from work, vacation or long weekends. Things that help half of us, make the other half worse. Good luck and let us know how things come out for you.