[Bethann]

Hello,
My name is Beth Ann, and came to this board to try to get some info, help, support for my mom. She was just diagnosed with PN. She is in some terrible pain. The dr gave her Gabapentin? to help with the pain. Doesn't seem to help her, though. Also she is so not happy with her Dr. He seems to just want to get out the door when she sees him. But after reading some of your posts, that is a normal thing for Neuros?
Anyway, thank you for reading my ramblings,

[Brian]

Welcome Bethanne, there is a lot of us here that have ran into useless neuro's in our early days of PN, but there are good neuro's out there that specialize in PN and will try to help their patients and if need be, refer them to pain specialists, depending were your mum lives, there may be someone one here that can suggest a good PN neuro and or pain specialist to help your mother.

In the mean time, i would ring that neuro and tell him that your mother is still in terrible pain and ask for advise for what to do, or even go to her general practitioner and ask for help.

Do you know what is causing the nerve pain ?

Brian

[Aussie99]

Finding a good doctor to listen to you and offer real support in the beginning is often a huge challenge for most of us. I had gone through 3 neurologists before I found the right one which offered real help and ideas for treatment.

If your mum is in the early stages of the illness everything can be a challenge and meds cause side-effects,and the illness can be frightening. You are a good daughter to reach out for support and helpon behalf of your mum.

It is important that your mum find a neurologist who specialises in neuropathy. There is various testing that can be done to see what sort of neuropathy she has. Also there are more meds than just gabapentin which can help with the pain. It would help if you could post more details about mum and how the docs think she got the neuropathy.

All the best,
Aussie

[nide44]

Bethanne,
Sorry you've had to come here.
It would be best if you could get your mom to come here herself,
to get the most out of our collective experiences.
She's going to have to go thru an entire change in attitude, and take control of her medical treatment plan.
She'll have to be her own best advocate
.
Many of us have gone thru many doctors- fired a few,
for lack of specialization and lack of compassion.
PN is a silent and painful disease.

Where are you?
Are you close to a Mayo Clinic, Johns Hopkins, Cornell-Weill, Jack Miller Center?
(There are others, too)
What kind of a doc (neuro, GP, PCP, etc) diagnosed your mom
& Rx'd her meds?

[daniella]

Hi. I hope your mom too will come post but it is very kind of you to get info. I was on neurontin but could not get up to a high enough dose for pain relief so it did nothing for me. So maybe she needs to work up to a higher dose or a diff med. Is she on anything for break through pain? Well like many here I m the queen of flunkie docs. It is very stressful. What state does your mom live in? I agree about the good internist I am on my 4th plus. Also maybe a pain clinic to work with pain control. Well welcome again

[Bethann]

Thank you everyone for answering me back!!

Unfortunatly, my mom does not have a computer. I know, crazy. We live in Virginia, she is in Portsmouth, I am in Virginia Beach.

I am going to have her spend the night with me Tue. so we can get on this board and she can see she is not alone. And also to write her history out, maybe we can get more advice.
So look for more on Tue.

Again, thank you for listening.
Beth Ann

[DejaVu]

Hi Beth Ann!

Just a quick hello! Wanted to let you know I think you are great for taking such an interest in your mom's difficulties! How sweet!

It is important she have lots of support!

You will read many different tihings about Neurontin.
Neurontin was made a primarily an anticonvulsant/anti-epileptic drug. Some docs are using drugs in this class for pain control. I have heard of many people being very senstitive to drugs within this class, although not everyone. Gaining a tolerable good of pain control can be a very individual matter!

While some docs can be hesitant to prescribe the prescription pain meds, It is the only way I have had any pain relief and can function at the same time! Really...for me..morphine was so much less mentally clouding and cognitively confusing that any of the other meds! I can think clearly on it and get the best pain control I have ever had with it. That is just my story though...there are many stories and many options!

It will take time for your mom to find out just what works best for her!

Glad you have come forth to ask questioins for your Mom, especially since she cannot do so on the net! Hope to hear more!

Give one anothe a huge, gentle hug when you see one another, as you will be great friends/supports to one another throughout life!

When Moms hurt, daughters hurt! And vice versa!

Bless you!

[Bethann]

Hi Deja!
Thank you for your response! After many conversations with my stubborn mom, I set up an appt. with her Primary care Doctor. I told my mom to just tell her that she was not comf. with the Neurologist, and his treatment.

Surprisingly to me, the PC Dr. agreed to work with her to find out what combo of meds will work for her. so now she is going to try Naproxen?? and Cymbalta. I'm just happy that the Dr is willing to try different drugs to help with the pain, unlike the Neuro who just said "Deal with it".

She had Kidney stones 6-7months ago, went in for surgery, and afterwards has been getting progress worse. 2 months ago the Neuro diagnosed her with PNeuropathy. So I don't know if the surgery brought the PN on, or was it something that was sneaking up on her. but guess that doesn't matter,
What matters is where are WE going to go next....because this condition does not affect just her.


Thanks for listening to my story.

[nide44]

Originally Posted by Bethann

Hi Deja!
............... she was not comf. with the Neurologist, and his treatment..............What matters is where are WE going to go next....because this condition does not affect just her.

She needs to find another neurologist.
A specialist in PN !!

[Brian]

Yep, Bob is 100% right.
It's the only way to go.

good luck
Brian