Hi all:
We just came back from Dr. Elowitz, who works out of Beth Israel. A very nice man. He is a neurosurgeon.
I brought all of Alan’s mri reports and all his films.

When we go to Alan's appointments, Alan prefers that I start doing the talking so I asked the doctor if this was okay and he said fine.

He listened to me describe Alan’s symptoms over the years, about how he can’t lie down at night but when I massage him, and he takes a xanax, that’s the only way he can sleep.

He listened to Alan explain that when he sits, “his feet do a dance”.

I also explained how his chiropractic/neurologist literally saved his sanity and got him off the fentanyl pain patch by his adjustments. I explained all of Alan has gone through and why were there, that we thought from the mri reports, that Alan’s PN is attributed to his back. Well, this is not the case.

The guy said “Alan’s PN has nothing to do with his back. There are no pinched nerves causing this. I have looked at the films, and read the reports and listened to his symptoms.

So I said “what we need is Gregory House from the show HOUSE!!!

The guy started laughing and and said “absolutely”.

I then said “so there will be no laminectomy, no endoscopic dischetomy, no nothing because Alan’s PN is not related to his back in any way shape or form, right?

He said “right. “ He then said “also there other symptoms we look at relating to the back. Alan has no back pain, he has no clumsy gait, he walks just fine.

“This has to do with the nerves in his feet. That’s why I’m sending you to a neurologist who specializes in Peripheral Neuropathy”. His name is Dr. Scelsa (who also works out of Beth Israel).

I then said “but we went to a neurologist in Coney Island Hospital and he did nothing”

The doctor replied : “There are neurologists for this and there are neurologists for that, this guy is a neurologist whose speciality is Peripheral Neuropathy. As a matter of fact, I sent my father to him”. I said “so what happened to your father?” and he went: “well, My dad was lucky, it cleared up on its own”

He said to me, Alan’s last emg was 3 years ago, he will probably order Alan a new EMG and a lot of new stuff is coming up on PN.

So when we came home, we immediately called this new guy who also works out of Beth Israel. His name is Dr. Scelsa, who also works out of Beth Israel.

The soonest appointment was for November 29th. So we made it.

Five minutes later, the secretary calls me and says “Oh wow, I don’t believe it, we have a cancellation for this money, the 6th, at 1 p.m., do you want it?”

I said “with bells on”. So now we’ll go on Monday.

So my question to any of you is this. “What can we expect to happen on Monday? And have any of you gone to a neuro who specializes in PN, and what happened. Those with idiopathic PN, I mean.

Thanks guys.

Melody

--but I know of many--I happen to think most--of the neurologists in the NYC metro area who have practices in neurology with real specializations in peripheral neuropathy (this is just from the research I've had to do over the years for my situation, and my involvement with many boards and the Neuropathy Association), and this individual's name is not familiar to me within that realm.

If it is who I believe it to be, he is better known for work on ALS, Myasthenia Gravis, and related neuromuscular disorders. Not that there isn't overlap between these neurological areas, but as many here have pointed out, if one has a choice, one would prefer to see someone in a practice devoted primarily to PN. And the number of physicians who fall into that category is not large. (And many of them are connected in some way to the Columbia Presbyterian or Cornell Weill health systems in NYC, which is where much of the local research in this field is carried out.)

During the time you've communicated about Alan's condition, I had pretty much assumed his improvement with Dr. T's administrations had meant Alan's condition was primarily compressive in nature (and certainly your massages' effects would corroborate this), possibly involving the nerve roots near the spine (a condition more accurately termed radiculopathy). It may have also involved the lower spine itself, though that would not be considered a peripheral neuropathy.

But now that you're saying that the interpretation of the radiology does not show anything that suggests spinal/nerve root compression/impingement . . .

Keep in mind also that doctors and radiologists can have radically different interpretations of the same films. Even additional opinions may be called for. Still, it would not hurt, if insurance will cover it, to get Alan a work-up following the Poncelet protocols and Liza Jane's charts--and I would suggest you bring the latter to any doctor you visit.

If you like, PM me and I'll give you a list of many of the city neuros who I know have specific PN practices or emphases.

Are you saying this new guy we are seeing, is not a specialist in PN.

Dr. Elowitz, today, told us this is his specialty.

Oh well, it's a $15.00 co-pay. Alan says this is it for him from now on. He's going back to the gym. He used to go 3 times a week, but after he fell, he needed time to heal.

He asked me before "how can this guy say it's not my back that is causing the PN? because when Dr. Theirl does his thing, I feel much better and when you massage my calves and legs, and my lower back, I'm in heaven.

Yeah, he's in heaven but not for the whole night. He's in heaven for about 20 minutes, long enough for the xanax to take effect. Then if he lies on his side, (or some particular position) it makes going to sleep easier.

We really did think that today was going to be a major big thing but I guess not.

I shall update you on Monday after we get back and we can talk about this some more.

Thanks glentaj. Will advise.

P.S. TOMORROW IS MY 59TH BIRTHDAY. Made it to 59 years old.
Now that's an accomplishment. And I still have my own teeth.

PPS.
Just did a search on the guy we are seeing on Monday.
Here's what came up
-------------------------------------------------------------------
Stephen N. Scelsa, MD
Director, Neuromuscular Division and ALS Center, Beth Israel
Center, Institute, Program The Hyman-Newman Institute for Neurology & Neurosurgery

Medical Specialty Neurology
Specializations/ Clinical Interests EMG/Neuromuscular Disease
Insurance See Insurance Providers
Board Certifications American Board of Psychiatry and Neurology (Neurology), 1993
American Board of Electrodiagnostic Medicine, 1994
American Board of Phychiatry and Neurology, Added Qualifications in Clinical Neurophysiology, 1996
Medical School SUNY Health Science Center at Brooklyn, NY, 1988
Residency Training Neurology, Albert Einstein College of Medicine Jacobi and Montefiore Medical Centers, Bronx, NY, 1989-1992
Fellowship EMG (electromyography) and neuromuscular disease, Albert Einstein Montefiore Medical Center, Bronx, NY, 1992-1993
Academic Appointment Associate Professor of Clinical Neurology, Albert Einstein College of Medicine
From the doctor Dr. Scelsa is director of the Neuromuscular Division and the ALS Association, Greater New York Chapter's Amyotropic Lateral Sclerosis Center at Beth Israel Medical Center.

Dr. Scelsa limits his practice to EMG (electromyography) and neuromuscular disease.
Email address sscelsa@chpnet.org
Address 10 Union Square East, Suite 2Q
New York NY 10003
Telephone212) 844-8490
Fax212) 844-8481

--------------------------------------------------------------------------------------------------------

Dr. Elowitz said today that this guy knows his emg and because Alan hasn't had an emg in over 3 years, maybe a new emg will tell us something about his neuropathy. Now I have no idea and thank god it's only a $15.00 co-pay. I have a feeling this is only the beginning.

*All Board Certifications and Subspecialty Certifications are granted by The American Board of Medical Specialties, unless otherwise noted.

I hope you have a VERY happy birthday. and many, many more!

Diana

HAPPY BIRTHDAY!!!

I hope that Alan takes you out for dinner, in spite of his own eating foibles, and that you really have a deliteful and relaxing time.

You are right to be confused, at the same time, do a web search of the doc's name followed by MD - I just found that he's published a lot and some in your area of concern. Finding a doc you can work with is worth the effort. You are right in the attitude of it's a co-pay.

For Alan's sake, I hope this time is the charm! - j

Happy B'day, Mel !
I have my own teeth too..........just not all of 'em .......

Glenn's experience and advice is, I think, sound.
I have a specialist in PN at Hopkins, here in Balto (head of the dept of Neurology). He's written papers on PN, and done research in China.
Most of his associates defer to him with PN questions.
I feel secure in his ability to Dx & Rx me properly.
He hit 'the nail on the head' the very first time I saw him
with proper Rx'ng for my symptoms.
His avenue of approach is leaning toward pre-diabetic causes,
but taken with a grain of salt and an open mind- I trust him implicitly.
That's what Alan needs.
The referral and bio you've posted, doesn't seem to fall into the PN specialist category- but what the He!!, its only $15 and he will give you his opinion on a new EMG that should be done, anyway.
Happy B'day, and...... good luck.

Alan wants to cancel on Monday and go to a Peripheral neuropathy program at Methodist. I have no idea what he will decide to do. It's up to him.

I think he should keep this appointment on Monday but hey, he has to make the decision.

Now, today I went to a surprise birthday party for my brother in law. My sister in law kept telling me: "melody, I can't wait for you to come, there will be a 100 year old lady there, she's Carl's aunt. You'll love her.

I absolutely love old old people (over 95) because they've been around forever and they know what it takes to live longer than I do and I always like to pick their brain.

So we get to the mansion. It's in Short Hills, NJ, up on this hill.

Seventy people are there. Big big house, many many rooms.

So I'm mingling and trying to find the 100 year old lady. I'm being introduced to this person and that person and I find myself standing in the kitchen having a lovely conversation with a woman with an accent and she goes, who are you?" I said "I'm Carol's sister in law and this is my husband Alan".

So we are all shaking hands, and we are talking about how much food is out on the different tables, and she's eating and drinking and we're laughing for about 20 minutes. My sister in law comes over hysterical and I go, "so where's the 100 year old lady I'm supposed to meet". All of a sudden this woman comes up to me, starts laughing and says "you've been talking to her for over 20 minutes, she's my mother".

I just looked at her. I gaped and said "you're 100 years old?, you've got to be kidding". She walked, she talked, she had a beautiful makeup on, she had her hair done, she stood erect, she ate, she drank, she conversed and she looked all of 65 years old. If her husband had lived they would have been married for 77 years.

I just hugged her gently (I was afraid of breaking her 100 year old body).

I just said "Oh my god, how do you do that?" She said "do what?" I said 'cmon, you're the second person in my life that I met who is 100 and the other one was in bed, wouldn't come out of her room in the nursing home, and eats peanut butter only". "How do you do it?". She started to laugh and her daughter said "yesterday, she woke up with a little pain in her back and said "oy veh", my back hurts" and the daughter told her "shut up, mama, you're 100". We all burst out laughing.

It seems she goes to many parties (this was her 3rd this week). Some guy in her senior citizen place, too her dancing last week. She volunteers several times a week and various places and well, she just blew me away.

I took pictures of her so when I get them developed, believe me I'll share them.

I hugged her when I left and told her I want to come to her 110th birthday party. She said "no problem".

Oh, they ran a slide show in the big tv room. They have this 65 inch television and my niece took 100 photos from different times in the birthday guy's life (many included me and Alan). and made them on some kind of dvd with music. You should have seen everybody's face when Alan and I came up on the screen from 26 years ago. We both weighed close to 300 lbs.

Well, I never laughed in all my life. Alan kept saying "change the screen, we don't look like that anymore". what a hoot!!!! I even said out loud "that's me??? you've got to be kidding, I never looked like that!!!

Alan blurts out "you were even bigger". Then I murdered him!!!!

So all in all, it was a good day, now I have to go and see if Alan is going to see the guy on Monday or not.

Will update.

Happy Birthday to me, Happy Birthday to me!!!!!

Melody

Paybacks are HE11! My reply was well, who's keeping track of the interest? Somehow, I wonder how Who will get What?

As for age, we are as old as we perceive ourselves to be...mentally or physically. It's what we do about the perception that counts...sort of like the 'interest'.

Well, if he doesn't go-you can't make him. Just sounds wimpy to me if he complains after all of the contortions and all.

Hugs, and party seriously with or without him! - j

Hey! I ALWAYS got back up on those horses right after I fell off...except for the last time - that took a few weeks. After that, I made sure not to fall off again.

HAPPY BIRTHDAY MELODY
I hope this new neuro is good and finds the cause of Alans problems, i know what Glenntaj means about neuro's that specialise in Neuropathy, i only got 2 recomendations in all of Melbourne for experts in Neuropathy, i don't know what the title means but mine is a Associate professor of Nueroligy, but he also deals with a wide range other neuro problems as well, i had him for my neck problem a few years ago, so you never know.
Brian

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