Shoulder and Daughter
 

Hi guys,

Thanks for all the wonderful Birthday wishes! Well, a full week later the doctor responded to my email letting me know that my shoulder is fine. I can't believe that it takes a doctor an entire SEVEN days to view X-rays on a shoulder to let you know that it is fine, AND you have to call him to get the results! Well, if you are a Californian, you would understand :Sob:"Kaiser-Permanente".

:Off-Topic:I also wanted to throw in a "brag" about my daughter... the 23 year old. Remember the one that was out on the streets using drugs and I was afraid for her life a few years ago? Well, now she has turned into Martha Stewart! (Without the ankle bracelet!) She has more tattoos than Martha, but her apartment and her life are soooo cute now! She has been clean for over a year now, she is engaged to a really wonderful guy. They have custody of his little five year old girl, and my daughter has decorated their apartment to look like a home in a magazine! The little girls bedroom is adorable, all Tinkerbell Fairies, I helped her paint the walls, two toned green and lavender, she put up adorable decorations on the walls, got the cutest furniture, and she cooks for her boyfriend breakfast and dinner every day, she takes her step-daughter to school and picks her up, does her homework with her, takes her to the pool in the afternoon, gives her a shower at night... WOW! I'm so incredibly proud of her!

Anyway, back to the docs...:Scratch-Head: I've seen the specialists, had all the tests done, nothing shows up as "significant" no diabetes, no thyroid, nothing that is causing the PN... just plain old Idiopathic Hereditary Small Fiber Peripheral Neuropathy... the doc says "lets try some other medications" and sends me home!

I really feel like another "number" in the system, :Speechless:and like they could care less about making me feel better, or getting help for me! I am beginning to feel as if they don't believe me! Like they just are "placating" me to shut me up... you know in these big HMO's they only have so much time per patient, and their job is to get you in and out as quickly as possible!

When they pull up the screen with my record on it, there is a list of medications over a page long.... :eek:and I'm only taking one of those medications! What's up?

I'm just ranting today, feeling pretty frustrated with this whole system... :(I get to change insurance plans soon and believe me, I'm changing!

Can't sleep because my shoulder hurts every night, I'm crabby, hot and tired! :mad:

You have hereditary small fiber PN? Isnt hereditary a cause? Or contributing to a cause if something such as toxins triggers your potential PN? Was genetic testing done? If you know it is hereditary , if it was me id be concentrating on pain relief and trying to give my body what it needs to heal. That is what i am trying to do, with an offical ideopathic cause, though im sure its toxins. Unless it is something like PN caused by diabetes, lyme, cancer etc, then in my opinion it doesnt really matter what the cause is because it is treated the same anyway.

Hi Seams:

Wow, about your daughter, now how cool is that?? You must be so proud, you could bust.

I am extremely happy to hear such nice news.

May she live long and prosper (as they used to say in Star Trek). lol

Melody

Hereditary Small Fiber Neuropathy?
 

I'm with Hey Joe,
If you have hereditary neuropathy, who did you inherit it from, what caused theirs, do they have genetic diseases? There is testing to be done for that type of neuropathy. I don't know if I ever heard of a case of hereditary idiopathic neuropathy. Have you had testing done for these types of neuropathy?

Billye

Happy for
 

Your daughter,isn't that wonderfull,well yes it is in a big way,good for
her...And Dan very good. Even and i mean even if it were herdiatery,
some folks are adopted,perhaps had a father ran far,far away and you
only knew Mama's side of family. Or someone in the family but to many
year's ago for anyone to remember,or to long ago for Dr's to have
known what your relative had. When i found out i was diabectic
insulin was just used in 1920,i think brain freeze,the year my mother
was born...
Goood for your daugther,what good news.. Sue

Seams--
 

--there are a number of known hereditary/genetic varieties of neuropathy that affect predominantly small-fibers and that can be tested for.

A doctor that won't order such testing is either uniformed or lazy, as results from somen of these may affect a treatment plan. If the former, you can educate him/her, if the latter, let him/her refer you to a center that will do such testing (or perhaps you can get there yourself--you probably already know about Mayo, Hopkins, Cornell-Weill, Jack Miller, Columbia-Presbyterian, Masssachusetts General, Jacksonville Shands, etc.--just from reading here . . .)

And take a look at:

http://www.neuro.wustl.edu/neuromusc...ory-small.html

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

You can take these to the doctors if need be.

:(I'm sorry I missed your birthday:hug:.

:hug:Here's a belated birthday hug.

And yeah--sometimes our kids do surprise us!!!!!!!!!!!