--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?

Melody--I've pm'd you some thoughts about the local docs, and an idea or two for tomorrow. Good luck and Happy Birthday!

Liza jane.

I just looked up some blood test results on one of Alan's blood tests from April 3, 2003.

ANTINUCLEAR AB W/RFX IFA
ANTI-NUCLEAR AB POSITIVE
ANA TITER & PATTERN
ANTI-NUCLEAR AB TITER
Reference Range:
<1:40 Negative
1:40 - 1:80 Low Antibody level
> 1:80 Elevated Antibody Level

Interpretive Note: The above results suggest the possibility of clinically significant autoimmune antibodies that may be detected by ENA (Sm, RNP, SS-A, SS-B, Scl-70, Jo-1) antibody assay or a dsDNA antibody assay.

Then in a CBC W/DIFF & PLT, the only thing that kicked in the abnormal range wa PLATELET COUNT which was 132. AND ESR,WESTERGREN which was 30.

I want to mention something about Alan's Ferritin Level. In a test from January 3, 2003, his ferritin level was 436.4. The range is 35-250 so he's high, right.
Well, yesterday when we came home from the birthday party, his cousin was driving the car and we were talking about a blood test she took a long time ago, and the only thing odd was her ferritin level, it was about 1400 so she had to give blood 3 times and it was normal after that.

Don't know if that info helps.

Also Alan took a hecromatosis test in 2003 and all was fine. They said "no, he does not have hecromatosis". We checked on that because one of his other cousins had it.


Oh, his Iron Profile Level was as follows:
Iron - 61
TIBC - 258
transferrin Sat 23.6

Nothing bad about those numbers, I think.

And I found a test named Gliadin Antibody IgA and IgG (If Quest)
Anti-Gliadin Antibody IgA: 8
Anti-Gliadin Antibody IgG: 8
Ref Text :reference range for Fliadin AB:neg. <20;weak
pos. 20-30; strong pos >30

I have no idea what this means.
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I forgot to say one more thing (and it might be important).

Alan's mother had Guilliam Barre Syndrome when she wa 48. She died many years ago at the age of 53. She was obese and had a heart attack.

But she was hospitalized for the GB for many months. Alan was 14 at the time.

We have mentioned this to every single doctor we have seen and they all pooh-poohed this.

I'm wondering???????????????????????????

Melody

OH, ALAN HAD HIS HEART SURGERY, (ANGIOPLASTY AND THE STENTING AT METHODIST)

Yeah, i see what you mean Melody, gees it makes it hard.
I know that some doctors and/or specialists don't like chiropractors, herbalists, naturalpaths, accupunture etc, they probably have their reasons i don't know, but i think that alternative medicine can [sometimes] offer more than conventional medicine can in [some circumstances] but not all of course.

This neuro/chiropractor has done a lot of study to be what he is [neuro/Ch] and the results from spinal manipulation has definatly done something to calm his neuropathy down, seeing our spine does affect differant parts of our bodies there must be something in it, but what is the million dollar question.

An MRI is fantastic machine but makes me wonder that when people have an MRI, the doc's are looking at xrays that have been taken whilst a person is in a laying down position and perfectly still, and the MRI xrays shows pictures of it in all in differant angles, but this is not the same in real life, like as we move bending, stretching, turning, and even sitting which all would have an affect on the spine, i can't work it out, its well over my head.
all the best
Brian