March 2011 PN Support Group
 

So we went to NYC and when we got there the St. Patricks Day parade had just ended. All those people wearing crazy hats, and green costumes, what a sight?

But the meeting was very interesting. We had a guest there from Italy. She is studying in our country and her expertise is Studying the course of neuropathy in mice. It's only in the infant stage but wow, at least SOMEONE is doing something about neuropathy.

And the next meeting is sure to raise eyebrows. A chiropractor is coming to tell us all about this laser treatment he uses and he says it CURES NEUROPATHY.

Our support group leader is going to make sure he is not a con man or someone out to take any money. Steven always makes sure who our speakers are before they can speak to us. He investigates everything.

I told him 'We are going to pounce on this guy, you better believe we all will have questions for him".

For example, what kind of laser, where does the laser go, how does it help us with neuropathy pain? Steven said the chiropractor said he gets rid of ALL neuropathic pain.

Cannot wait till the next meeting and be advised I'll update everyone on what is said at that time.

Bye for now.

Melody

I just googled Laser Treatment for Neuropathy and I found this article.


http://www.merchantcircle.com/blogs/...y-work-/536389

Very interesting.

Melody

There is a new franchise of chiros, advertising this.

Watch out...they are slick! and expensive!

They offer free first visit, and that is your clue.
If the words "functional medicine" are mentioned, then this
is the keyword to watch for. (basically they use the same supplements we discuss here, only they charge very high prices for all the testing, and supplements)

Some chiros are using cold lasers:
http://www.ehow.com/about_5036278_co...europathy.html

Hi Melody,

Is this a public type seminar meeting on neuropathy? If so I would greatly appreciate any information as I need to get educated on neuropathies. I have had RSD and PN for years but my doctors have always concertrated on the RSD and the injury I had and PN always takes a back seat. I'm at the point that the RSD is under control for the most part. I have been working PT for 2 years now, I am on disablity, but they allow a certain amount of dollars a month actually they advocate it. Anyway I am making it a priority this year to find out the last thing that is lingering from my injury. What I have found out is finding a doctor who in extremely knowledgable in this area and if they are do they want to try and fix it, I am not looking for treatments, pills I want a fix. Maybe I'm being ingnorant but I'm going to try and really put a big effort into it.

Anyway, again I would appreciate any information.

Gabbycakes

Gabbycakes--
 

The meeting Melody refers to is the monthly meeting of the New York City Neuropathy Association support group. I've been to a number of them (though not this month--my son's basketball team is in the midst of playoffs and they had a game Thursday night, and I'm assistant coach), and anyone can come--there are many discussions of experiences, treatments, research, and the like.

I definitely want to come to the next one, as I too am skeptical of laser treatment being able to "cure" neuropathy. Those of us who've done our homework are quite aware of how elusive and persistent this beast is, and how to this point there's been little that is effective across all the many different types and manifestations of neuropathy.

There may be use for lasers applied in certain ways. Obviously, lasers can be used to burn away certain nerve overactive pathways, as in a rhizotomy--though I doubt the technology is advanced enough to make this practical for many people, as the laser would have to be targeted with micrometric accuracy on certain pathways and not others--and lasers targeted at certain tissues might help with circulation, as in anodyne therapy, which can secondarily help with neuropathy and other conditions primarily by promoting the conditions for healing--allowing oxygen and blood-carried nutrients into damaged neural areas and allowing for wastes and toxins to be transported out--but I am skeptical of global claims.

Mel,
Watch out for snake-oil salesmen.
I had a chiro tell me he could cure my neuropathy in just 20 visits
at $75 a visit ($1400.00-not insurance covered)
with a 10% discount if I paid it up-front.
Riiiight!!
I did go to him for an x-ray of my finger (trigger finger)
and he gratis x-rayed my feet & spine
(so fuzzy I couldn't tell if it was me or a cat).
I thanked him, paid for the finger x-ray and didn't let
the door hit me in my butt on the way out.

I don't mean to be a "debbier" downer but any doctor to me who says he can cure this is a salesman. It is one thing to say you can have better relief etc but to say cure is a huge word. I saw a holistic doctor ones who my grandfather see's monthly. My grandfather spends hundred a month on supplements and the holistic doc tried to get me to do the same. The doc even had his own website with supplements. I just don't like that kind of care. It seems less about the interest of a patient and more about the $.

Hi there Gabbycakes:

Every month, on the 3rd Thursday of the month we all meet at the CBS building in NYC, in a big room with a big table. As a matter of fact I have a video up on youtube which will show you what a meeting looks like.

Here is one of the videos that I have up. You can link to my others. Just look for where it says PN Meeting. I have two others which actually show one of the people from the Neuropathy Association and what their goals are.

So go here first.

http://www.youtube.com/watch?v=s-WFkd7H4TQ

And you'll see me, and Glenn from Neurotalks and you'll see how we all get along and we have coffee and cake. It's a support group, not a seminar.

But we do have the occasional guest speaker or doctor come and speak to us. That's why we are all VERY interested in what this new guy will say when he comes next month. I shall report back here.

I know you are looking for a fix. We all are. The only helpful thing I can share with you is my experience with diabetic neuropathy. I have been taking 5000 of the Methyl B-12 for over 2 years now.

BEST THING I EVER DID.

Hope this helps.

melody
P.S. I don't know where you live but if you give me the location of your city, I can try and find you a support group as close to you as possible.

Hi Glenn:

We missed you Thursday night. Steven said "Where's Glenn"??

You missed my blueberry muffins. Want to know how good they were? Because they were so good and I didn't make enough last time, I made sure to make 24 this time.

After everyone had their muffins, there were a few left over. At the end of the meeting, I stood up holding the tray of muffins and I said "who wants to take home some muffins?"

There are now no muffins left.

lol lol lol

Glenn it was a really good meeting. But we all can't wait until the next one and I'm glad you are coming. Steve says he's going to make sure this guy is not a con man or anything like that.

So we shall see.

Melody

Daniella, I completely agree.

The only chiropractic neurologist we ever saw was Dr. Theirl, who took Alan on as a patient about 7 years ago and completely changed his life. I mean, literally, he spent over one hour with Alan every time he went and he used this G5 machine which, when Alan came home, well he was a different human being. Unfortunately, this doctor no longer practices in NYC. Alan loved him.

So we shall see what this new chiro guy says next month at the next meeting.

Melody

Mrs. D. So if the chiro guy that comes to the next meeting, if he stands up and talks about functional medicine, then my radar is going to go up. I shall report back, believe me, I SHALL REPORT BACK.

Melody

I ALMOST feel sorry for this chiropractor already. If i am back from Georgia in time i may come to this meeting also.

Don't worry about the chiropractor. I'll give him one of my muffins.

melody

Yup,...:eek: stick one of em in his mouth to shut him up :cool::D:p

Boy, you really don't like chirpractors do you?

You must have had a really bad experience with one??

I myself have utilized their services from time to time.

About 30 years ago I had yawned in my sleep, heard a pop and when I woke up and was in the shower, I tried reaching for the shower head and I could not raise my arm. It was dead at my side. REALLY DEAD.

I did no know what to do. I got out, toweled myself dry, (I had an 8 month baby at the time), and told my husband.

My husband takes me to the emergency room and some idiot raises my arm, and tells me 'keep it up in the air". Of course it fell down. He starts to yell at me. I walk out and we went home. I then went to a neurologist who did some nerve conduction thing and told me I had a damaged axillary nerve. He pointed out all the nerves and pointed to one and said "thats' the one". Can't remember much, it was so long ago.

The pain I went through was unbearable. Can you imagine trying to find a position where you are finally not in pain. I found it. I had to lie off the bed with my head on the floor. You can't take care of a baby when you are lying in that position.

I then called my parents who lived in Florida and they said "get on a plane, we'll take care of you and the baby and we'll send you to a nearby chiropractor".

So Alan (who had to work), put me on a plane, (with one dead arm) and an 8 month old baby, and I arrived in Florida.

I will NEVER forget that experience if I live to be 100.

They made an appointment for me.

He examines me and sees that I have a dead arm, and that takes my hand and says "I can do a manipulation will hurt like hell but I can give you the use of your hand". He then takes my thumb and forefinger and told me 'try to keep these two together as I hold your hand. I could not. My hand was dead. I cold not keep a grasp on his hand.

Then he said "Okay, here we go, hold on"

I'm lying face down on his table, he takes his hands and he presses something in my neck, I hear a crunch and I had the WORST experience of my life, and I screamed. He then said "give me your hand and I'll show you what I did".

My two fingers worked fine.

But....I had jumped off the table crying and said "How many more do you need to do"?"and he said "A few". I said "I can't do that any more'.

He said "Okay, I understand, we'll do it by stretching your neck but you have to come here every day for one week".

So that's what I did. I did that every morning for one week while my parents took care of my son.

I then flew home and followed up with a chiropractor near my house.

Took me a LONG LONG LONG time to get over that pinched nerve.

You have to USE it or else you LOSE it.

Never forgot that experience.

So next month we'll see what this new chiro guy has to offer with his laser treatments.

Will update when I know. Since it will be a month from now, I'll begin a new thread after that meeting.

Melody

I had something similiar happen back in 1985 or 86 i cant remember exactly but anyway i went to get something out of the cabinet, grabbed it and then my arm just fell, no control at all, i couldnt lift it again for a few minutes then it went away and never came back. scary.

Wow, your arm went dead for a few minutes and then it worked fine?? And you never found out why?

Holy Cow!!!

Mel

no pain , no tingling, no warning. one minute ok, then no control then back to ok again. strange. ive shrugged off a lot of sprains, strains and pain over the years.

That can (but not always) be very typical of TIA's. Hence the "Transient" in TIA. A small clot can trigger a motor nerve and cause the 'dropping'. Once it clears, you can have function again. I have had several of the same (arm thing)...and also 3 small strokes.

Glad it never happened again. But if it does, you should always have it checked, even if you get function back. Many stroke patients had some sort of warning (TIA) that went unchecked before their stroke.

you are right i should have. i was 28 years old, in great shape, and thought i was invincible. ive had brain mri since then, nothing there,,,err i mean abnormailites.

Melody,

Thanks so much for the reply. Love the UTube video.

I would love to come to the next meeting. I know the city pretty well so it's not a problem getting there, I live in NJ.

I hope I would not be intruding because I don't have the typical PN that most have. I always read about PN in the feet, hands but mine is in the elbow area. My injury was a serious one, I had to have a prosthetic elbow inserted, many complications, many surgeries to fix the complications, then came the RSD and there treatments. Years later I am doing pretty well but still left with this strange type of constant pain, most of the RSD symtoms are under control. So to sum up I have been trying to get someone to work with me to find out if I definitly have PN, my doctors who have worked with me for years, say yes you do have some PN in there. But after all I've been through I keep getting answers like theres not much to do, it's not that bad. But for me if I could get rid of this last bit of pain and discomfort I would almost be back to normal. It's a very strange pain and effects me in the endurance area which keeps me from doing things like vacuum, sweep, garden anything that you have to use your arms for and keep them moving, like pushing, pulling etc. yet I can probably lift 50lbs it's very strange. So that's my problem.

Thanks Again,

Gabbycakes

Melody that was so sweet the you tube video. I like putting a name to a face.
Gabby I think you would be very welcome and surprised at how many people are not what you would think "typical" pn. When I was at the pain clinic support groups even people with other conditions that caused pain or health problems we all shared a common bond and could relate to each other.

Gabbycakes.

I'm trying to picture myself as you walk in the room and I'm saying "oh hi Gabbycakes". That's what happened when Glen walked into the room the first time. I had never met him. We were all sitting around and he walked in and he was talking about sprouts and I thought he was Steve Myerowitz the Sproutman, and I ran up to him and said "Oh, you're the Sproutman", and he laughed and said "you know me from Neurotalks, I'm Glenntaj and I almost dropped to the floor I was so surprised. I started saying "This is Glenntaj from the internet group I go to".

We all laughed. It is SO nice to put faces to names. Sometimes pain conditions can really do us in, no matter what the cause.

At this particular PN Support meeting we have people with various kinds of Neuropathy. Some gals have Bladder neuropathy, pelvic neuropathies, some guys and gals have Peripheral neuropathies (hands and feet). Many have had surgeries on their backs and have PN because of that. Some have PN because they had been on chemo, etc.

So you see, there are many various reasons a person can have PN. Some of us are diabetics also. Steven Smith runs the meeting and if you need a hookup with a doctor near where you live or even in NYC, one of us will direct you to the proper guy. Steven knows EVERY doc there is to know in the area of PN. He even has doctors phoning him with questions about THEIR patients. We all learn from each other.

So you are most welcome to come and enjoy a few hours of information, laughs and of course my muffins.

I believe I'm making Banana chocolate chip next month.

Of course there is always the possibility of some people not showing up because of inclement weather or people are sick but by and large, people show up, we listen, we chat and we learn.

So I am very much looking forward to you coming. But you have to tell me who you are when you walk in.

lol

Melody

Hi Melody,

Thanks again for the information. I will definitly try and make it next month. All of my doctors are in NYC so I' m in the city a alot.

I can't wait for your muffins and I will let you know when I walk in.

Gabbycakes

Sounds like a plan Gabby!!!!
See!! I called you Gabby.

lol

Melody

See you there.

You are very kind. Thank you.

Gabbycakes