Alan's sister was just diagnosed with Neuropathy
 

Well, isn't this interesting?? Their mother had Guillian Barre Syndrome MANY years ago and passed away at the age of 53.

Alan's sister had previously told me that she had a Morton's Neuroma and would get trigger shots. A few years ago when she was describing her symptoms I said to her 'that' s neuropathy" and she said "no, I have Morton's Neuroma"

So yesterday she went to the podiatrist and they did some kind of test and told her 'you definitely have Neuropathy"

She told the doctor that her brother has had it for 20 years and the doctor replied: 'Oh, it's hereditary"

Alan got on the phone and asked her 'how long have you had these symptoms and she said "over 20 years"

OVER 20 YEARS????

We never knew. He asked her why she never said anything and she said "I thought it was my Morton's Neuroma"

So what this means, I have no idea.

But Alan has had neuropathy for 20 years and now we find out that his sister has had burning feet, tingling, etc for 20 years!!!!

All I can say is OMG!!!!

Mel

Ah, family communication.
 

And, of course, given my incredibly dysfunctional family, I can say that. :o

Do you think it might be worth getting Alan some of the genetic neuropathy tests now? (And would your coverage pay for it?)

Glenn:

I don't think he's ever had this. I have to go and ask his doctor. It would be in his file. I remember YEARS AGO, when he was hospitalized because he took celebrex, and he developed this body rash, his whole body, face, everything blew up, and I took him to the hospital, and they called in the people with the hazmat suits who came into the ER and were examining him and told me "I think he has Rocky Mountain Spotted Fever" and I remember it being 3 a.m. and I'm sitting there saying "Are you people serious? He took a celebrex, this is an allergic reaction, (they still had not given him a bendryl by that time). They put him in isolation (which has it's own air supply).

I remember the doctor coming in and saying "We are going to run every blood test under the sun". Then the tests came back as him having no calcium in his body and the doctor said "Oh my someone goofed on these tests, because if this were his calcium level he would be boneless, I'm going to send his blood work to MY lab up in Hematology. They took more blood and did tests for ANA titers (I remember that one), and every test in the book.

Now this was not for his neuropathy but it was for his rash condition. They finally determined that he was allergic to Celebrex and gave him benadryl and his body went down and his rash dissipated but it took some time.

I remember a janitor coming in and trying to get his garbage pail and the guy was dressed in a hazmat suit and he ran in and ran out, and I said "what the hell are you doing?"

Then one day the doctor came in without wearing any kind of mask and said "we are moving Alan", he's not contagious" and I replied

DUH!!!!

That's when they moved him into the general population.

So I don't think he has had any genetic neuropathy testing.

I also do not know if his insurance covers this. But believe me, his doctor is a WONDER, and if he can get this done, HE'LL GET THIS DONE.

And if he gets the genetic neuropathy testing done, what are they looking for, and what can be done?

And if we had known this 22 years ago (did they even do genetic testing 22 years ago), would the outcome had been any different?

Thanks much Glenn.

We have MUCH to talk about at the next meeting, don't we??

Melody

.....how can a person have the same symptoms as a family member for 22 years and a lightbulb doesn't go off?.......

AHHH, denial. read my thread on '.Yes...BUT..I'm different...."
Its also the:
"my symptoms are different than yours cause my problem is worse than yours - you only have PN, you look great- I, on the other hand am suffering terribly"
And their doctors are better than yours, or they are the worst, but they won't change.

Have Alan tested for genetic history.
BTW, does he have any past relatives that are Middle European? German, Polish, Russian, any of the ...vakia's, etc?

Alan said RUSSIAN, probably Ashkenzai!!

Thanks,

Melody
I would have never thought of your explanation about denial. Never in my life.

Melody
P.S. We are going to ask his doctor to run genetic testing.

But honestly, what can we hope to hear, and can anything be done about this after 22 years?

As Nide mentions--
 

--there are a awful lot of genetic syndromes among Jews of Eastern European background (and a rather high incidence of autoimmune disease among people of such backgrounds as well, and we know Alan has psoraisis . . .)

There are some well known hereditary neuropathies such as the Charcot-Marie-Tooth variants, and some not so well known ones, such as the hereditary sensory neuropathies associated with point mutations:

http://neuromuscular.wustl.edu/time/hsn.htm

http://neuromuscular.wustl.edu/time/hmsn.html

As you can see, it's a long list, and these are only the ones that have been documented to this point . . .

Glenn:

Thank you very much. It will take me a long time to properly read and understand those links.

the one that caught my eye (because of the age of onset) (he AND his sister), is the Ataxia Neuropathy.

I'm going to look into this one. (Not that this is the one has) but I just want to read about this.

And I gather because Neuropathy is Neuropathy, that there is nothing they can do at this stage of HIS neuropathy.

I really do believe the only relief anyone who has the burning and tingling, and once they have tried the neurontin and everything else, the ONLY respite would be medical marijuana. It's natural, and if used correctly, wel it would stop the burning.

Let's hope NY passes it.

And Glenn, I can't thank you enough.

Melody

Mel,
Just remember, any use of Medical Marijuana is probably going go give
anything from a 'buzz' to a 'high'. Some people like this feeling
and it is soothing and can seem to dissipate the symptoms of PN.
You learn to function at a very low range of a 'buzz' but its always there.
But if one doesn't like to get a mild high from booze or meds, MM isn't on the books for them.

Oh, then I was completely off base about MM. I thought if one had a serious chronic pain condition, then one didn't get a buzz or high, one just had NO MORE PAIN.

Interesting info. Thanks for the clarification

You are a treasure trove of info for me.!!!!

Melody

I know of a person who uses it and does not get a buzz or get high. They still have some pain but it is bearable and it would be awful without it. And this person has tried pain killers before and the only thing that helps is MM.