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Old 04-04-2008, 09:55 PM #11
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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.









Quote:
Originally Posted by Bethann View Post
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.
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--- LYME neuropathy diagnosed in 2009; considered "idiopathic" neuropathy 1996 - 2009
---s/p laminectomy and fusion L3/4/5 Feb 2006 for a synovial spinal cyst
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Old 04-05-2008, 08:57 AM #12
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It's even an excuse for buying a computer, and I do believe they've gotten relatively inexpensive lately.

Hear ! Hear !
For less than $400, it could bring you $1000's of advice and keep in touch with others
who can recommend various things for treatment and meds.
It would pay for itself in less than 6 mos.
If she's serious about helping herself, and not just relying on you to do it for her -
get the computer and for $9.99 a month (on various ISP's), she can be in touch with others like her, from around the world.
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Old 04-05-2008, 11:05 AM #13
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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.

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Old 04-05-2008, 01:22 PM #14
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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!"

I know this from my own experience!

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.

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." 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!

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!"

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!

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