New PN Treatment

[MelodyL]

Originally Posted by bent98

I spoke to Dr. Odell and he said that he plans on training Drew Demanm who is the director of Manhatten Spine. He hasnt as of yet but you can call over there and ask to speak to Drew and get some info over the phone. I looked him up. Check the linked below.

http://manhattanspine.com/

If you want to talk to the doctor Robert Odell you can call him on his cell phone 702-521-9542 .

I suggest you do both. Let me know how your conversation goes with Dr. Odell.

HI. Thanks SO much.

Will update when I contact these people. I do all of this before Alan gets involved. I'm like his advocate.

I'll let you know what happens and if you get this double procedure, please do let us know, okay?

All the best

Melody

[bent98]

Originally Posted by MelodyL

HI. Thanks SO much.

Will update when I contact these people. I do all of this before Alan gets involved. I'm like his advocate.

I'll let you know what happens and if you get this double procedure, please do let us know, okay?

All the best

Melody

I am not going to get it as I can't afford to fly to Nevada and stay there for a couple of weeks. When you are dealing with the upper back/neck is more complex then the ankle and feet area.

[MelodyL]

Originally Posted by bent98

I am not going to get it as I can't afford to fly to Nevada and stay there for a couple of weeks. When you are dealing with the upper back/neck is more complex then the ankle and feet area.

Ah...I see.

Then I guess it's up to Alan and I to investigate this possibility.

I'll update when we do.

Thanks again

Melody

[Brue]

Originally Posted by MelodyL

Ah...I see.

Then I guess it's up to Alan and I to investigate this possibility.

I'll update when we do.

Thanks again

Melody

I just moved down to Florida and I'm going to see a new neurologist on Friday. If he turns out like all the rest of them I've seen, I'm going to call this guy O'Dell and see what's up, because my feet are the problem, and maybe this guy can help. I'll probably call him anyway. Thanks for the info on this line!

Brue

[MelodyL]

Originally Posted by Brue

I just moved down to Florida and I'm going to see a new neurologist on Friday. If he turns out like all the rest of them I've seen, I'm going to call this guy O'Dell and see what's up, because my feet are the problem, and maybe this guy can help. I'll probably call him anyway. Thanks for the info on this line!

Brue

Best of luck Brue:

Keep us posted.

Melody

[Brue]

Originally Posted by MelodyL

Best of luck Brue:

Keep us posted.

Melody

Hell yes. This stuff is 24/7 miserable. Found out my doctor in Md. couldn't call in a prescription for tramadol because in Md. it's a controlled substance, even though it's not in Florida. They said I would need to have him put a written prescription in my hand (couldn't mail it), which I would carry over to the pharmacy. Good luck with that, Brue!! Now I'm all out. See another neurologist on Friday, so we'll see if he can give me some. I don't care what else the guy does, so long as he does that. These doctors are useless - nobody cares about a cure, and they don't care if you suffer. O'Dell might be the ticket, because I surely can afford to go out there to get some relief from this affliction that never gets any better.

[bananababe]

Incidentally, I was just looking into this treatment when this thread was started. I have just started this treatment on my feet. It is supposed to gradually heal your nerves each session and you can start noticing results within 1-2 weeks.

The Drs at the clinic I am going to met with Odell and learned from him. They said they have experienced 86% success rate in reducing/eliminating pain for people. They have not seen any negative effects from it, only that it doesn't produce any results for 14% of their patients. They said the treatment method is spreading and they are treating 15-20 patients a day. It is used at Cancer Centers of America for chemo-induced neuropathy with a 90-some percentage success rate. It is also FDA approved.

I am in the chicago area and there are supposed to be around 6 places around here that do this treatment now.

I will keep you updated.

[MelodyL]

Originally Posted by bananababe

Incidentally, I was just looking into this treatment when this thread was started. I have just started this treatment on my feet. It is supposed to gradually heal your nerves each session and you can start noticing results within 1-2 weeks.

The Drs at the clinic I am going to met with Odell and learned from him. They said they have experienced 86% success rate in reducing/eliminating pain for people. They have not seen any negative effects from it, only that it doesn't produce any results for 14% of their patients. They said the treatment method is spreading and they are treating 15-20 patients a day. It is used at Cancer Centers of America for chemo-induced neuropathy with a 90-some percentage success rate. It is also FDA approved.

I am in the chicago area and there are supposed to be around 6 places around here that do this treatment now.

I will keep you updated.

Oh how exciting and please do keep us informed.

Best of luck, Melody

[bananababe]

I figured it was time for an update, though I was hoping to give you better news. I have had 5 treatments with no change in symptoms. In fact, I have had a flare over the past week or so but I don't think it's from the treatment. We have halted the treatment as of yesterday because I am paying cash and it's expensive and not working. They did say one man didn't see results until the very end of a month's worth of treatments, which is how long they generally give it a try to see whether it's helping you or not.

I am back to blood testing for autoimmune issues because I have had more sensations elsewhere in my body in addition to more pain in my feet. I believe everything else has been eliminated. I have radically changed my diet to eliminate sugar and increase whole grains and vegetables, not that I had a horrible diet prior to the onset of the neuropathy one year ago. I have had MRIs and EMG/NCV and blood tests last fall with everything normal. I got off two medicines I was on for a long time in case they were the culprit.

I'm not sure if I want something to turn up now or not! On one hand, it would be helpful to have some sort of diagnosis, but on the other, no one wants to find out they have a disease.

[mrsD]

You might want to try the gluten free diet, for at least 3 months and preferrably 6 or more. It can take a while to clear the gluten reaction.
Some people react to gluten with PN symptoms. Since you added whole grains to the diet, and had a flare, I'd seriously consider gluten as a trigger.

https://sites.google.com/site/jccglu...eralneuropathy

Originally Posted by bananababe

I figured it was time for an update, though I was hoping to give you better news. I have had 5 treatments with no change in symptoms. In fact, I have had a flare over the past week or so but I don't think it's from the treatment. We have halted the treatment as of yesterday because I am paying cash and it's expensive and not working. They did say one man didn't see results until the very end of a month's worth of treatments, which is how long they generally give it a try to see whether it's helping you or not.

I am back to blood testing for autoimmune issues because I have had more sensations elsewhere in my body in addition to more pain in my feet. I believe everything else has been eliminated. I have radically changed my diet to eliminate sugar and increase whole grains and vegetables, not that I had a horrible diet prior to the onset of the neuropathy one year ago. I have had MRIs and EMG/NCV and blood tests last fall with everything normal. I got off two medicines I was on for a long time in case they were the culprit.

I'm not sure if I want something to turn up now or not! On one hand, it would be helpful to have some sort of diagnosis, but on the other, no one wants to find out they have a disease.