Newbie
 

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:),

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 :)

Welcome Bethanne
 

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

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?

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

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:)

Beth Ann...Bless you!
 

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!:D

It is important she have lots of support!:D

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!:winky:

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:hug:, as you will be great friends/supports to one another throughout life!:winky:

When Moms hurt, daughters hurt! And vice versa!:winky:

Bless you!:D

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. :D:D

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

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

good luck
Brian :)

Bethann, to really help your mom, we need to know her history--what happened to her when, and what tests were done. It would help to ask doctors for copies of all tests done on her, and keep them in a looseleaf, so you can take them from doctor to doctor, as you look for the right one.

This is a great introduction to the computer for her, and I hope she comes on and joins us. It's even an excuse for buying a computer, and I do believe they've gotten relatively inexpensive lately.

Hi Beth. Welcome here! Very nice of you to worry about your mom. PN is a very difficult disease to treat and it can take several trial and error tries until she finds out what helps her. I have tried Lyrica and it does give me some releif. I take up to 150 mg a day. Sometimes my pain is better, sometimes it is worse. I don't know what determines that, but i am happy for the good days. I have learned a lot here about nutrional support for healing nerves. Perhaps you could jump to "vitamins and supplements" and check some threads that have a great information about nutrients that can support your mom's healing.

:)

Hi Bethann!

It is very important your mother find a neurologist she can work with.
It's also important the neurologist knows what s/he is doing when dealing with neuropathies.

While I do think it's important your mom's primary care physician was/is willing to try to help her out with pain and with meds, it's also important the potential causes of neuropathy be thoroughly investigated!

Sometimes the neurologist's personality/attitude and/or lack of knowledge causes people to want to "flee!"

Other times, it is simply the "subject matter!" :eek:
I know this from my own experience!:winky:

I like my neurologist and he is listed as a neuropathy specialist.
He is a very nice guy, has a great rapport with patients, is kind, compassionate, etc.:D

I just love seeing him in the local supermarket! We stop and visit a bit..about "normal stuff" in life!:)

I do not like going to the neurology clinic though...for my "condition.":eek: I would not mind going there to work ..to attend an appointment with a friend or family, etc. Yet, I hate having to go there for myself!:thud:

When your mom feels as though she wants to "flee," it is of some importance for her to determine why she wants to "flee."

Sometimes that reaction is a good basic instinct!:)

Other times, it may be a feeling of fear evoked more by the "topic" (the reason for needing to see a neurologist) than by the actual neurologist.

(Sometimes the "gender" of a doctor also makes a huge difference for some people's comfort level.)

It is vitally important, however, that your mom establish a working relationship with a neurologist. There are many potential causes for neuropathy.

It is important the pain is treated and she is as comfortable as she can be. Yet, it is also so very important to discover any underlying cause if this discovery can be made! If an underlying cause is one that can be adequately treated/addressed, the PN may stop.

Not all causes of PN can be identified and not all causes ( when identified) can be stopped. Yet, if she has a cause that can be stopped...that would be great!:)

As far as meds for pain are concerned, this is a very individual matter.
Personally, I have many adverse med reactions, so my choices are limited.
The med or med combination that works best for me may do the same for anyone else.

I will caution you and your mother, however, please educate yourselves as to the potential side-effects (adverse reactions) of meds. I have not yet found one med that did not have a potential "down side" to ingesting it.

Believe me, Bethann, it is best to become as informed as possible about everything...meds, neuropathy causes/treament, pain management, etc.

There just in no other way to have truly "informed consent" as a part of your mother's care!

It is my opinion (all may not agree) that doctors (even the best of them) have become accustomed to not giving as much information to patients about meds, treatments, etc. (I see my doctors heavily stressed by time constraints and expectations placed upon them about the number of patients they must fit in each day!) Depending upon how their "practice" is set up, someone else may be dictating how many patients get pushed through the on any doctor's caseload on any given day!

Although I still do not find this a good excuse for failing to fully inform patients...the climate I witness is one of no longer giving much time/energy to fully informed consent. This means.. in order to be as safe as possible and in order to be getting the best care one can obtain, one must become very educated about every aspect of their care! Is this a roayl pain? Absolutely! Yet, not educating oneslef and looking out for oneself/loved ones is really inviting trouble. Even if we feel that should not be the case... it is very often the case.

We are all telling you these things because we do not want you/your Mom to find these things out the "hard way!" :circlelove:

If your mom can "find her way into the net," that would be great! Yet, I also understand that some people have great difficulties with this. (Some have financial difficulties beyond what we can often imagine. Others just do not have this within their "skills" and/or interests and they feel additionally stressed by this. While it would be ideal for your mom to get involved directly, in some ways, I cannot guess at which way of handling this is best for your mom! Maybe you would feel relieved if she did get directly involved and maybe this is something she is up to right now..and then again..maybe not. That issue is something for the two of you to negotiate. (Not everyone is of the same "make up," having the same areas of strengths and weaknesses, etc. I know of some people I have helped quite a bit as far as gathering info. from the net is concerned because this only made them more anxious at the time.)

Again, I deeply applaud your interest in helping your mother!:You-Rock:

There are some very intelligent, very experienced, very caring people here...able to give you and/or your mom excellent advice!:grouphug:Hang in there!:hug: