[abbyrition]

Hello,
I was diagnosed with Neuropathy this week, and just found this forum tonight. I have been browsing and searching but I can't find anyone like me, and I was wondering if I'm alone.
I don't have the hands and feet or skin sensitivity.
My major pain complaint is in my large intestine. This occurs immediately after a bowel movement and the pain can last from 4-6 hours varying in intensity.
The other symptoms I have are extreme fatigue (I often don't leave my bed these days), hot flashes, dizziness, and nausea commence if I push through the fatigue.
I don't know much about this diagnosis, but I'm looking for info, and some shared knowledge, and simply to know I'm not alone in what I'm going through.
I have been placed on Bentyl and 30mg Cymbalta. I have been experiencing a bit more nausea with the Cymbalta, but my doc says that will fade with time.
Currently I am seeing my family doctor, and I'm wondering should I go to a PN specialist?
It's taken 5 years, and several doctors in various specialities, to get a diagnosis.
So is there anyone else on the boards that has G.I. specific neuropathy?

[Leesa]

Hi Abby ~ Gosh, I've never even HEARD of it, much less known anyone with it. i have peripheral neuropathy of the legs/feet, and I hate it, but I think I'd hate YOURS much more!!! Bless your heart, that must be MISERABLE!! i'm wondering if perhaps an anticonvulsant would work for you too, like they have us on -- something like Topamax or Neurontin. These meds are anti-seizure meds but are also used for nerve pain. You might ask your doctor about them. I prefer Topamax as I feel it works better than Neurontin -- plus you don't gain weight on it. Most people even LOSE weight.

Anyway ~ you must be a rare breed!! I've never heard of this condition and I hope you find something that helps SOON. God bless and take care. Hugs, Lee

[abbyrition]

Thank you Leesa. I'm at the very beginning of my journey through this, even though I've had the issue for 5 years. Just having a name for my symptoms is helpful. Reading through these boards is also helpful, because while my pain isn't in the same places as the majority with PN, it seems the fatigue, and level of pain is the same, and just reading about others is helpful.
I'm in sponge mode, and am soaking up all the info I can get my hands on.

[Darlene]

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There are great number and caring fellow members here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[dahlek]

Jump on down to the 'peripheral neuropathy' site?
http://neurotalk.psychcentral.com/forum20.html Click onto this blue and it'll take you rite there..
There has been posting intermittently now? A member called KMEB if you do a 'member's list' search...you can find all her posts ... She's got it bad.
Hopefully you got your problem caught in time and before other things complicated this neuropathy!
Other neuropathies can be caused by gluten and some inherited issues...so check these sources out, please. The 'stickies' [sources of good stuff that should 'stick around'?] are chock full of mind expanding or warping or dulling aspects of neuropathy diagnosis and then treatments. After a while? All the 'tech' words will just roll off your tongue! Why? Because you needed to have learned them, and often must use them w/docs!
Good luck reading stuff...do it in 'bit's please? Otherwise your mind might melt! Info Overload is not fun to have! Hugs and hope and soon! 's!!!!! - j

[RhondaIndy]

Originally Posted by abbyrition

Hello,
I was diagnosed with Neuropathy this week, and just found this forum tonight. I have been browsing and searching but I can't find anyone like me, and I was wondering if I'm alone.
I don't have the hands and feet or skin sensitivity.
My major pain complaint is in my large intestine. This occurs immediately after a bowel movement and the pain can last from 4-6 hours varying in intensity.
The other symptoms I have are extreme fatigue (I often don't leave my bed these days), hot flashes, dizziness, and nausea commence if I push through the fatigue.
I don't know much about this diagnosis, but I'm looking for info, and some shared knowledge, and simply to know I'm not alone in what I'm going through.
I have been placed on Bentyl and 30mg Cymbalta. I have been experiencing a bit more nausea with the Cymbalta, but my doc says that will fade with time.
Currently I am seeing my family doctor, and I'm wondering should I go to a PN specialist?
It's taken 5 years, and several doctors in various specialities, to get a diagnosis.
So is there anyone else on the boards that has G.I. specific neuropathy?

I have only heard of this in diabetic patients. Have you considered seeing a GI specialist? He/she could possibly give you some insight on your problem.

Take care,

Rhonda

[Friend2U]

So glad you found your way here to NeuroTalk! I look forward to getting to know you better. Best wishes!

[abbyrition]

Thank you Darlene & Rhonda for the friendly welcome.

@ Rhonda - I don't have diabetes, and I was going to a GI specialist for 2 years, he said there is nothing left he can do, all my tests were clear. He referred me on to the Gyno. Which also led to more all clear tests.

@dahlek - my mind may be melting already. I did search all of KMEB's posts. She is the closest I have seen, but not the same. I do feel for her, after reading all she goes through. It is amazing what a person can handle when they have to. I will go check out the link you left, I just feel like I don't fit in there sometimes. I don't have the tingling, anywhere.

I must say - all the folks on these boards have been helpful, friendly, and welcoming. Even though I haven't found someone like me, I have still found many people with great ideas on handling some of the same symptoms I deal with each day. So thank you for this boards existence, and all the community involved.

[RhondaIndy]

I just wanted to share some information with you. I cared for a patient with a gastroparesis related to an injury from a surgical procedure she had. She is in a scientific study and has an implant (similar to an SCS) that sends an electrical current to that particular nerve. I think she said hers is made by Medtronic.

I just thought this was interesting and wanted to share it with you.

Take care,

Rhonda