Melody,

Let me add my wishes for a very happy birthday - and it sounds like it was indeed!

Just one more thought about the doc situation. Sometimes, neurologists who are primarily in clinical practice, that is not in research or education, will focus on one area and then move to a different, but related, specialty. So it is possible that the doc to which Alan was referred has seen a lot of PN patients and thus still has considerable expertise in the area.

I would have to say that I am a little doubtful of this in your particular case, but thought I would just mention it just in case. And if this doc is associated with a research or teaching hospital, then there is very little chance of that.

I know it is hard to be patient. We all want answers yesterday. And Alan and you have been through so much already, like so many here. I do know that you are persistent and tough. You two will persevere and hopefully all of this will payoff with more clarity - and relief from making the rounds of all the docs!

rfinney

--but happy birthday, Mel!

You know you're doing OK when your age approaches your weight. (unless you're Kate Moss. )

(If you're speaking of Methodist Hosptial in Brooklyn, there are a few neuropathy specialists there--you can always PM me if you want to discuss.)

Looks like you had a grand time!

I guess we are both Scorpios! HAHAHAHAHA....

I just googled Peripheral neuropathy program at Methodist Hospital in NYC.

here's what came up.
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NYM Establishes Program Aimed at Diagnosing and Treating
Peripheral Neuropathy


Ten to twenty million Americans suffer from some form of peripheral neuropathy, yet public awareness of this condition is low. Often, those who have one or more signs and symptoms remain undiagnosed for months or years, sharply reducing their chances for successful treatment.
The Neuropathy Program at New York Methodist Hospital, a division of the Hospital’s Institute for Neurosciences, is dedicated to the diagnosis and treatment of individuals with peripheral neuropathy. Neuropathy results from damage to the peripheral nerves, which connect the central nervous system to the muscles, skin and internal organs. The disorder varies in severity, but has the potential to be highly debilitating.

Peripheral neuropathy can occur at any age but is most common among older adults. A neuropathy may arrive suddenly or progress gradually, over a period of years. “A neuropathy may be the first sign of a previously undiagnosed condition,” said Adina Goldfarb, M.D., director of the electromyography (EMG) laboratory at NYM. These conditions include diabetes, hepatitis, infectious or rheumatologic disease, cancer or side effects of medication or chemotherapy.

A neuropathy can be caused by infections, such as Lyme disease; illnesses, cancer, kidney failure, pressure resulting from repetitive motion or remaining in one position, rheumatoid arthritis or nutritional deficiencies. Additionally, genetic abnormalities and damage from direct trauma pressure can also contribute.

While the causes of neuropathy vary, they tend to produce similar symptoms. “Most often patients suffering from neuropathy will experience weakness, numbness, burning, tickling or tingling sensations (“pins and needles”), pain in the legs, arms and feet and difficulty walking,” noted Cary Buckner, M.D., director of clinical neurophysiology at NYM. Some neuropathies can also cause constipation, diarrhea or sexual dysfunction.

Clinical examinations and tests are used to evaluate and diagnose peripheral neuropathy. “Through various tests, we are able to determine the severity and often the underlying cause, and suggest the most promising form of treatment,” said Dr. Goldfarb. The program offers uniquely qualified physicians, specializing in the field of neuropathy, as well as the highly advanced technology needed for its diagnosis.

Neuropathy can frequently be managed and fully controlled, especially when a diagnosis is established at an early stage. Therapy may involve treatment of an underlying condition, surgery, physical therapy, splinting or lifestyle changes (for repetitive stress injuries.) “Although recovery can be a slow process, after treatment, many patients are able to return to a healthy and happy lifestyle,” said Dr. Buckner.

For more information about the Neuropathy Program at New York Methodist Hospital, or to schedule an appointment, please
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Now doesn't this seem a bit more logical than going to a neurologist whose main specialty is ALS?

Comments are welcome,.!!!!!!!

melody

The part i can't understand is that didn't Alan find relief from his neuro/chiropractor ? then this guy says its nothing to do with his back

Just wanted to add my belated wishes for a Happy Birthday!! to you.

Back to the doctor: If I was looking for a doctor for my PN, I'd sure rather see one who is a specialist in PN, not one who specializes in other stuff. Just my two cents.

Billye

Brian:

I absolutely asked Dr. Elowitz exactly what you said. I said "I don't understand the fact that if the chiropractic neurologist, worked on Alan's back, did adjustments, and Alan was able to get off the fentanyl pain patch, and because I massage Alan's spine and calves and legs every single night, his PN goes away for a period of time, THEN HOW CAN YOU SAY WITH SUCH CLARITY THAT IT'S NOT FROM HIS BACK, NOT FROM THE BULGING DISCS????

The doctor replied "I have looked at the films (up on the wall, they were highlighted like x-rays are). "I have looked at the mri reports as well".

I can only determine from what I see and read from these reports. Nothing I see lets me come to any conclusion that his neuropathy comes from his back.

"Everybody has bulging discs"

I then said "so you can conclude 100% that there is no disc pressing on a nerve that is affecting his feet and doing the PN?"

He replied "yes, that's my conclusion". Alan has no pain radiating down his buttocks or his legs, that would lead to telling me it's from his back. But from the films, and from what I read in the reports, I can categorically tell you that's it is not his back".

So if a neurosurgeon says it's not his back, the only logical conclusion we can make is "IT'S NOT HIS BACK"!!!!! right??

Alan has decided to cancel tomorrow and go to Methodist.

I just printed out the information on methodist and Alan read it and said "wait a minute, I have rhematoid arthritis", I have this. I have that.
I'm going to Methodist"

So there you have it. As of five minutes ago, he's going to make an appointment with Methodist.

OY VEY!!!!

Melody

Initailly when my back problems came on, I had back pain all the time. It kind of felt like I was chopped in two,as I had almost no strength at my waste area. But all the pain was in my back.

Then one day I had very little pain in my back, but tremendous pain in my legs following the path of the sciatic nerve running down the buttocks area. The feeling was intense burning,ripping,weakness,motor issues,numbness, & all sorts of other weird sensations.

It never went into me feet though. When they operated on me, they removed the 2 discs that were compressing the spinal nerve roots,and I had no more leg & buttock pain. The pain was then localised back up to my back area, until I healed, and then had no more pain for one glorious year.

I guess you can say that I had PN back in those days too, when that pain was radiating into my legs. I had sensory changes,pain,burning,tightness,motor problems,weakness.

But it was quite evident that this was a compression type problem, as one week in bed with antiinflammation drugs and heat and it would shift or reduce the pain.

What I am trying to say it that it was very localised,and things such as massage,spa, anti inflammation tabletes helped me alot. But the problem was the actual compression that needed to be released from the spinal nerves, and that was clearly evident in my MRI.

From what you are saying, Alan's MRI doesn't reveal impingment on the spinal nerves and his PN was very diffuse with burning feet, kind of like the PN that most of us seem to have here.

There is a great possibility that his PN could be from another source other than back?