[MelodyL]

A few days ago she called and said "It's official, I have neuropathy".

I said "who said?" She said "My podiatrist"

Her podiatrist did the filament on the toes thing (she had gone to him because of the pain in her toes and she thought it was her Morton's Neuroma acting up). The podiatrist said "you have neuropathy, I can give you Neurontin"

She replied "Are you crazy, my brother has neuropathy and neurontin made him deathly ill"

The doctor then said "your brother has neuropathy??" Then it's hereditary.

I asked her if she is going to follow up with emgs and nerve conductions and she is not. That is totally up to her. It's her business.

My husband called her and said: "How long have you had these symptoms (tingling, etc.) She said "Over 20 years"

He said "And you never told me"???

She said "I thought it was my Morton's Neuroma"

I have nothing more to add. I am looking into hereditary neuropathies (which is the direction I should have gone 20 years ago, but who knew???)

Melody

[daniella]

I know this must be frustrating for you and your husband. So is his sister going to do anything to treat this or further testing?

[MelodyL]

Originally Posted by daniella

I know this must be frustrating for you and your husband. So is his sister going to do anything to treat this or further testing?

Nope. Read the initial post once more. She's not going to do ANYTHING.

Hey, some people can deal with this and some people can't.

Each to his own.

Melody

[Kitt]

Do any other relatives - mother, father, siblings - of Alan's have this? Or if they do, do they just hide it. Just curious is all.

[MelodyL]

Originally Posted by Kitt

Do any other relatives - mother, father, siblings - of Alan's have this? Or if they do, do they just hide it. Just curious is all.

Alan's mother had Guillian Barre syndrome and died at the age of 53. We told this to EVERY SINGLE neurologist we went to. Everybody said "this has NOTHING to do with Alan's neuropathy". Then (about 7 years ago), Alan was diagnosed with CIDP and put on IVIG infusion.

When I asked the neurologist who diagnosed him with CIDP, if this had ANYTHING to do with Guillian Barre, she said "no, it's not connected"

Then, later on, I went to a CIDP website and guess what? CIDP, is a variant of Guillian Barre.

So who is one to believe. Not the neurologist.

And because the IVIG did nothing for his neuropathy (we thought it would help his pain and were later told it is not for pain, it's an immune system booster), and she took him off of it because it did nothing.

So we were then told once again "It's idiopathic" And THEN, because he developed back problems in his 60's, we were told "Well, it might be related to his back".

but because we never knew that his sister had symptoms for over 20 years, we did not know about this genetic link.

So NOW what we know is that Alan's mother had Guilliam Barre and died at 53 (she developed this condition in her late 40's).

Alan's sister has had neuopathic symptoms for over 20 years (she developed this in her 40's)

Alan has neuropathy and developed this in his 40's

ANYONE SEE A PATTERN HERE!!!!!

Melody

[echoes long ago]

yes everyone sees it but doctors. i remember you talking about the guillian barre his mother had a number of times and i remember that you asked questions about it.

doctors make lousy detectives. detectives recognize and further investigate related occurances. they dont believe much in coincidences. doctors operate in a sphere of denial. i have been to many funerals of relatively young men and women who were exposed to a wide array of toxins, over 200, at the same event as i was at and who subsequently have been dying at an alarming rate in recent years to a variety of cancers some of them quite rare in the population and many quite rare when age is taken into account. everyone sees the cause effect except doctors. useless.

[MelodyL]

Originally Posted by echoes long ago

yes everyone sees it but doctors. i remember you talking about the guillian barre his mother had a number of times and i remember that you asked questions about it.

doctors make lousy detectives. detectives recognize and further investigate related occurances. they dont believe much in coincidences. doctors operate in a sphere of denial. i have been to many funerals of relatively young men and women who were exposed to a wide array of toxins, over 200, at the same event as i was at and who subsequently have been dying at an alarming rate in recent years to a variety of cancers some of them quite rare in the population and many quite rare when age is taken into account. everyone sees the cause effect except doctors. useless.

Hi. About 6 or 7 years ago, (maybe longer, can't remember), Alan was sent to a physiatrist. Never ever heard of that kind of doctor.

Anyway, we were sitting in her office and this is the FIRST question she asked Alan.

Were you at ground Zero (in NYC) on 9/11.??

Alan said "Was I where???" and she again asked the question and I said "why, what does that have to do with anything?"

She said and I quote:

"you have no idea how many first responders have come down with neuropathy"

????????????????

Melody

[daniella]

Originally Posted by MelodyL

Nope. Read the initial post once more. She's not going to do ANYTHING.

Hey, some people can deal with this and some people can't.

Each to his own.

Melody

I do agree that everyone copes with this in a different way.

Echo I agree about doctors. They seem to not make connections or look outside the box. It is frustrating. I have had so many "flukes" happen as they say which I don't believe is a fluke.

[Rosie33]

Originally Posted by daniella

I do agree that everyone copes with this in a different way.

Echo I agree about doctors. They seem to not make connections or look outside the box. It is frustrating. I have had so many "flukes" happen as they say which I don't believe is a fluke.

The word "Fluke" is in the dictionary of "Medical Terminology" to save the doctor's butt when he doesn't know what's going on or how to help you.......I'm just sayin'