Re: Cathie, could you explain more

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In a message dated 12/16/07 7:30:26 PM, nnnttwilliams@... writes:

about this. I have my first neurology appointment in a few weeks. I

still have a lot of problems with my right arm. And I thought about

neuropathy that I have heard a lot of us develop. I am so skeptical

of doctors right now. I am going outside of my network for this

appointment. ANY suggestions are great, I am so afraid they just look

at me and say you look fine and send me home. Thanks, Nan

I can identify with that.... If you look well, then they think you are well, right???

I would suggest seeing a Neurologist who specializes in Peripheral Neuropathy and provide all supporting neurological symptoms for a workup. If Peripheral Neuropathy is suspected, a punch biopsy can be done easily by a doctor or PA and sent to one of several labs. I think s Hopkins was early in utilizing this technique to determine the presence of small (nerve) fiber neuropathy. This is a very simple biopsy and can even be done by your Dermatologist.

I don't know what kind of problems you are experiencing with your arm, but if it is numbness and tingling or unusual sensations, he/she will probably want to do EMG and Nerve Conduction studies to determine if there is some problem. These do not always come back negative though in Peripheral Neuropathy. The biopsy allows for examination of fibers present in probably 3 tiny punches, which is much, much easier than having a more invasive sural nerve biopsy.

Here is where you hope you have a co-operative Neurologist. I know many, like myself, have had to insist on various testing, in order to get help...

There are several intitutions, other than s Hopkins, in the U.S. who have labs who will read the punch biopsy I mentioned. It takes about 5 minutes for JH lab to explain the procedure... You would probably want a workup by a Neurologist, since I doubt that anyone will do a punch biopsy without some supporting data...

It has been a couple of years, since I talked to JH, but I believe that the old contact number in the neuro department is AC410-955-2227. Their neuro lab, where biopsies are sent is probably at another number and I do not have this.

The other thing I wondered was if you had silicone implants, which might possibly have leaked down into the tissues of your arm. This would probably be handled a little differently, in that, removal of the leakage might be possible...

See the URL below (Glenntaj's posting) for the difference between a punch biopy (known as an intrapidermal nerve fiber density biopsy) and a Sural Nerve Biopsy, which is a far more invasive biopsy. A Dermatologist can do this easily... You will want to avoid a Sural Nerve Biopsy, if at all possible. You will need to scroll down to see this after pasting this into your browser...

Cathie

http://neurotalk.psychcentral.com/showthread.php?t=30909 & highlight=punch+biopsy**************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

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The most important aspect of this is missing....what is the treatment?

>

>

> In a message dated 12/16/07 7:30:26 PM, nnnttwilliams@... writes:

>

>

> > about this. I have my first neurology appointment in a few weeks.

I

> > still have a lot of problems with my right arm. And I thought

about

> > neuropathy that I have heard a lot of us develop. I am so

skeptical

> > of doctors right now. I am going outside of my network for this

> > appointment. ANY suggestions are great, I am so afraid they just

look

> > at me and say you look fine and send me home. Thanks, Nan

> >

> I can identify with that.... If you look well, then they think you

are well,

> right???

>

> I would suggest seeing a Neurologist who specializes in Peripheral

Neuropathy

> and provide all supporting neurological symptoms for a workup. If

Peripheral

> Neuropathy is suspected, a punch biopsy can be done easily by a

doctor or PA

> and sent to one of several labs. I think s Hopkins was early in

utilizing

> this technique to determine the presence of small (nerve) fiber

neuropathy.

> This is a very simple biopsy and can even be done by your

Dermatologist.

>

> I don't know what kind of problems you are experiencing with your

arm, but if

> it is numbness and tingling or unusual sensations, he/she will

probably want

> to do EMG and Nerve Conduction studies to determine if there is

some problem.

> These do not always come back negative though in Peripheral

Neuropathy. The

> biopsy allows for examination of fibers present in probably 3 tiny

punches,

> which is much, much easier than having a more invasive sural nerve

biopsy.

>

> Here is where you hope you have a co-operative Neurologist. I know

many, like

> myself, have had to insist on various testing, in order to get

help...

>

> There are several intitutions, other than s Hopkins, in the

U.S. who have

> labs who will read the punch biopsy I mentioned. It takes about 5

minutes for

> JH lab to explain the procedure... You would probably want a workup

by a

> Neurologist, since I doubt that anyone will do a punch biopsy

without some

> supporting data...

>

> It has been a couple of years, since I talked to JH, but I believe

that the

> old contact number in the neuro department is AC410-955-2227. Their

neuro lab,

> where biopsies are sent is probably at another number and I do not

have this.

>

> The other thing I wondered was if you had silicone implants, which

might

> possibly have leaked down into the tissues of your arm. This would

probably be

> handled a little differently, in that, removal of the leakage might

be

> possible...

>

> See the URL below (Glenntaj's posting) for the difference between a

punch

> biopy (known as an intrapidermal nerve fiber density biopsy) and a

Sural Nerve

> Biopsy, which is a far more invasive biopsy. A Dermatologist can do

this

> easily... You will want to avoid a Sural Nerve Biopsy, if at all

possible. You will

> need to scroll down to see this after pasting this into your

browser...

> Cathie

>

> http://neurotalk.psychcentral.com/showthread.php?t=30909 &

> highlight=punch+biopsy

>

>

> **************************************

> See AOL's top rated recipes

> (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

>

[Guest guest]

In a message dated 12/17/07 9:17:02 AM, glory2glory1401@... writes:

The most important aspect of this is missing....what is the treatment?

Please do NOT freak out here, in the event you are experiencing nerve pain. Most of you probably did not have a problem like I did in 1992, when my implants were removed... This was before surgeons were more accepting of the importance of the "en bloc" technique in explantations. Unfortunately, mine was not accepting of this technique. Hopefully, you all have had surgeons who know better by now...

Treatment for peripheral neuropathy depends on the cause. There are a number of things that can cause neuropathy: autoimmune problems, various drugs, toxic exposure, Diabetes to name a few... Don't count on most doctors to point fingers at our implants. I don't think that will happen in most cases.

In my own case, I had enough Rheumatological testing to reveal autoimmune abnormalities, and also abnormal EMG/Nerve Conduction studies and an abnormal Sural Nerve Biopsy... I have been treated with Prednisone, only because this was the only thing I responded to, other than IVIGG's. Please understand I am NOT promoting Prednisone here, it is not without its drawbacks. In autoimmune disorders however, at least some of the time, something has to be given to hold the immune system at bay.

Some physicians will start off using non-steroidal anti-inflammatories and see what the response is before trying stronger treatments.... For me, this did not help at all. There are some pain medications llike: Advil, Ibuprofen, Lyrica, Cymbalta, Topamax and others which, in combination with the above may help. If there is no response and the pain is severe, a doctor may try: Plaquenil, IVIGG's, Prednisone or even stronger drugs in combination with various pain medications...

Other causes of neuropathy may respond to treatment for the underlying disease, like Diabetes...

Cathie**************************************See AOL's top rated recipes (http://food.aol.com/top-rated-recipes?NCID=aoltop00030000000004)

[Guest guest]

Nan,

I had that where my right arm locked up and felt paralyzed with implants... I did the corvelan M and exercised that arm daily, stretching it... I also know another lady, Penni who went through this as well... Lay on the bed and stretch out that arm.. Put your arm over your head and bend it behind your head gently and stretch it out daily... It does get better in time... Mine still locks up a bit at times and you can hear it pop some, but it is night/day since explant... I will pray for you Nan...

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