Alan's Pn Is Not From His Back!!!!!

[MelodyL]

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

[glenntaj]

--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.

[MelodyL]

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
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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
Telephone:(212) 844-8490
Fax:(212) 844-8481

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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.

[dlshaffer]

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

Diana:)

[dahlek]

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

[nide44]

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.

[MelodyL]

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

[dahlek]

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.

[Brian]

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 :)

[rfinney]

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

[glenntaj]

--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.)

[mrsD]

Looks like you had a grand time!

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

[MelodyL]

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

here's what came up.
--------------------------------------------------------------------
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
-------------------------------------------------------------------------

Now doesn't this seem a bit more logical than going to a neurologist whose main specialty is ALS?

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

melody

[Brian]

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 :confused:

[Silverlady]

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

[MelodyL]

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

[Aussie99]

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?

[LizaJane]

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

[MelodyL]

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)

[Brian]

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 :confused: 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 :)

[Steve]

Look, I'm not a doctor and don't have a crystal ball, so I can't say for sure what's going on with Alan.

All I know is, after I was diagnosed with small-fiber PN, I later discovered that my pain could be aggravated by pressure at certain places in my neck. That does not in any way fit the picture of small-fiber PN.

SFPN is not in itself positional. Only compressive neuropathies are positional.

I, too, was told that my neck is fine, my spine is fine, and so on. However, I recovered through PT, manipulation, trigger-point treatment and other stuff--all of which work only on compressive neuropathies.

So what gives? When I was hanging out on TOS sites, I heard about a doctor in PA who has a theory about TOS and SFPN. He thinks early TOS sufferers get small fiber pain, because their compressions are technically mild enough that only the long, thin axons of the small fibers are affected. So they'll get burning, tingling, or whatever weird sensation their nerves are prone too--but they won't get total numbness or motor loss they way somebody with full-blown TOS might.

Personally, I think the same thing can happen in other compressive neuropathies besides TOS, where a bulge, tight discs or some other problem chokes and aggravates the tiny small nerve fibers. In these cases, the irritant is almost never visible on MRIs. It's too minor, or it may be muscle-related, or not obvious when the patient is lying on the table in a certain position (much like the way TOS itself is invisible on MRIs).

Doctors don't recognize this syndrome. But my PT people had seen it multiple times.

Anyway, something like that happened to me. Maybe it happens to Alan, too.

[MelodyL]

I just went over to him and massaged his thighs and calves again because I saw he was sitting in his lounge chair and moving his foot up and down and sideways, like he always does when he is in neuropathy hell!!

So as I massage his thighs, he goes: "why on earth does this take away my pain?". I said "Alan, it's a mystery. Maybe it is auto-immune, maybe this, maybe that"

I mean we can go around in circles, now can't we??

Oh, I've been reading about lyrica and his primary care guy would give it to him but I explained that Alan cannot take neurontin and if lyrica is similar to neurontin, I'm afraid to encourage Alan to try it.

He tried neurontin twice (the lowest dose), and yeah, it took away the pain but he got violently ill (flu symptoms and fevers, both times he tried it).

So he's hesitant about going in that direction again.

Do you think if he tries lyrica the same thing might happen to him?.

By the way, he's allergic to celebrex and all sulfa drugs (if that helps any).

melody

[Brian]

So if increased blood cirlcation improves his PN, makes me wonder if magnets could help him as they increase blood circulation to, i mean strong magnets rare earth magnets are cheap and do the job, about 3,000 gauss reading, works fine for me.
might be worth a try, never know.
Brian :)

[MelodyL]

I have the three balls in the magnassager, they pop out.

I'll take them out, put them on Alan's thighs and put something around it so they don't fall off.

Will update.

thanks so much.

Melody

P.S. I just googled poor circulation and a whole bunch of stuff came up on Peripheral Vascular Disease.
Now Alan was checked for that when he went years ago to Coney Island Hospital. The worst place in the world by the way. They did a doppler (or something down by his legs) and the guy said "you have 20%". That's all I can remember but the guy said "this is not what is causing the PN".

I copied and pasted.
---------------------------------------------------------------------------------------------------------

What causes poor circulation to the foot:
Poor circulation is most commonly caused by a progressive blocking of the arteries in the leg (athersclerosis). Those with diabetes are more likely to develop poor circulation to the foot. Other risk factors for developing poor circulation include a lack of physical activity,smoking, high blood pressure and high cholesterol.

The effects of poor circulation (peripheral vascular disease) on the foot:
The biggest affect of poor circulation on the foot, is that its problems (such as sores, infections, cuts, etc) develop, they do not heal as well as they should. In many cases they do not heal at all without special care. The reason for this is that the blood carries vital elements (eg oxygen) that the bodies tissues need for vitality and healing.

Treatment of poor circulation:
Poor circulation can be treated by your doctor or vascular surgeon in a number of ways:

* Good control of the blood glucose level is very important if diabetes is present.

* Other risk factors - such as lack of exercise; high blood pressure; smoking; and high cholesterol levels also need to be addressed.

* Drugs can be used to prevent the blood clotting (antiplatelet agents and anticoagulants).

* Angioplasty can be used to enlarge the narrowed peripheral arteries.

* A vein from another part of the body can be used to bypass the narrow or blocked artery can be used by the vascular surgeon.
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Now, I know that this is a stretch, but the fact that Alan had to get a stent in his chest because of a blockage, and because when I massage his thighs and his calves, he goes to heaven, could this be a POSSIBILITY!!!!


Now Alan is already going to the gym, he lost weight, he's on plavix, and I have no idea if indeed they will find out it's his circulation (BECAUSE ULTIMATELY IT HAS TO BE SOMETHING THAT IS DOING THIS?', right??

I'm sure whichever doctor he goes to now will test him for Peripheral Vascular disease. Is there a definitive test so that when the doctor gets the results, he will go : "Aha, Alan, now we know, this is what you have". or OH SHOOT, YOU DON'T HAVE IT!!!"

Thanks guys,
Melody

[mrsD]

I don't think the Magnassager balls are magnetic themselves. The unit is an electromagnet
field producer, and hence moves the balls around.
Three stainless steel balls are suspended by a magnetic field and produce a free-rolling, frictionless massage. The balls rotate at an adjustable speed to provide a slow, wonderfully deep muscle massage aimed at “untying” muscle knots and relieving deep muscle tension. It can also be used as a fast, superficial and invigorating skin massage.

That is why it is so heavy.

[Silverlady]

Brian,
There is an MRI now that shows what's going on when you are standing up. It is actually called a standing MRI. I just found out about it.

Billye

[MelodyL]

Well, so much for the balls!!!!!

lol

Melody

[nide44]

Yeah, Mel......leave Alan's balls alone ..... !! LOLOL :)

As for the Lyrica, I take it and have no ill effects.
IMHO, its great, but I didn't have any problems with Neurontin either.
I've heard both sides- some who couldn't tolerate Neurontin, do OK & now swear by Lyrica.......and some who took Neurontin OK, can't take the s/e of Lyrica. I guess ya gotta try it to see what happens- a 50/50 shot?.

[Brian]

Brian,
There is an MRI now that shows what's going on when you are standing up. It is actually called a standing MRI. I just found out about it.

Billye

Thats interesting, i never knew they had vertical ones now, so there might be something to it after all.
I have had 3 MRI's thats going back a few years, they were terrible then, like being stuck in a sewer pipe for what feels like an hour or so,, but i believe they are a lot better these days and you can actually see a lot more of whats going on outside, i believe.
thanks for the info Billye :)

[snoozie]

The stand up MRI is by a company called Fonar.

http://www.fonar.com/patient/

I am patiently waiting for one to come to my city. ...Sue

[LizaJane]

Melody, when my feet hurt at their worst, at their very worst, applying pressure to them would help. I came to think of it this way. There's really nothing going on in the foot to cause the pain fibers to be firing; if I could send a REAL signal back via sensory fibers, it replaced whatever defective one my brain was getting. So a foot massage would remove the pain.

Even now, I think that replacing one sensation with another is sometimes adequate for a LOT of pain. For my back, for instance, I use a TENS unit at times. It sends a pleasant buzzing feeling. When its firing, it overtakest he pain sensations. That's kind of the theory behind it.

But physical therapy, myofascial release, mainly, has lead to real improvement in my neuropathy. And I had TOS until my PT worked under the armpit and freed those nerves. I do think compression is an under-rated cause of nerve decline, and it's incredibly important to never stop validating our own experiences and what we can learn from them.

If relieving pressure helps Alan, it might help again. If rubbing and massaging help, that's good to know. (I have a friend who just bought himself one of those compressive calf and foot massagers, kind of like what they use in the hospital.)

Good luck.

[MelodyL]

About three years ago, Alan's sister bought him one of those things that you pull over your legs and onto your feet. You pump it up, and the you turn it on and it's like an air compressor.

When we saw it on the infomercial we told her and she's the kind of person, if you tell her you saw something, the next day you find it in your mailbox.

Believe me, I've received food processors, leg warmers, gloves, (oh yeah, last month it was a clock radio),WHATEVER!!

She has to be the most generous woman on the planet.


So we get this thing (I think they called them air compressor boots, or something like that). The purpose when you them on, is that they compress different parts of your legs at different stages. I can't fully remember but it seemed like a good idea at the time.

Well, he puts them on, turns them on and they do their thing and Alan looks at me and says "what is this supposed to do for me". I burst out laughing. It did absolutely nothing. We returned them, and she got a refund.

I can't wait till the next thing arrives.

Two weeks ago, I must have mentioned something about Alan and slippers and no sooner do we go to the birthday party on Saturday and we are downstairs, does she whip out two pairs of mens slippers for Alan. and two magazines for me. And a necklace and pair of earrings for my birthday. She always says to me "my brother would be dead if it werent' for you".

I just stared at her. She is one amazing lady.

So I'lll just continue to massage his thighs and calves. It really does make a difference. I don't want to do his feet because he gets ulcers and I don't want him to bleed.

be well
melody

[Steve]

in the calves (http://www.latrobe.edu.au/podiatry/myofasc/myofascialpics/fig10.jpg) refer pain to the feet.

[DOUG]

I Hate Mri S They Are Very Closterphbic Just Had An Mri On Dec 4th
And The Jackhammer Noise Drives Me Nuts It Was Along 30mins
No The Quack Wants It Done With Contrast I Said Knock Me Out