[armanda]

First let me start off by staying how amazing of a group you guys have here. I have been reading your post for a couple of days and WOW you all are so nice and caring and sweet and so helpful. It just came to me that I can join and stand in for my mother til I can finally talk her into joining. She doesnt like dealing with computers too much so it will take me some time but until now I am going to stand in.
My name is Armanda. I have a sweet, sweet mother how has had Neuropathy for 2 years now. She was as healthy as can be. She eats super healthy, gets lots of exercise and sleep and in her late 50s she has never been on any kind of daily medication!!
Two and a half years ago she told me her bladder seems like it has fallen so she went to her family doctor and he said yet it has and he recommended her to this surgeon. Well she goes to this surgeon and calls me and tells me she needs a full blown Hysterectomy. I was a little leary about it but she seemed pretty confident. I live in AZ and she lives in Ohio so we dont get to see each other a lot so I wasnt there to make sure everything was ok but she has been with my dad since they were 15 yrs old and hes always taken good care of her.
Ok so she has this surgery and I went home to Ohio to help her bc i know this is a pretty big surgery. The moment I saw her she looked so different. This doctor took her smile and her glow. She has never been right since this surgery and always said she wish she never would have had it because she just doesnt feel right.
6 months later she starts showing signs of Neuropathy!!! And its been going on for 2 years now. She said her feet and legs hurt so bad. That it feels like shes been walking on them forever. She said her lips are on fire. She described them as the chappest lips you can imagine and take the hottest hot sauce you can imagine and put that on.
I think the constitant pain is making her crazy. She was suppose to get an evaluation done and she didnt.
Does anyone know of anyone that this has happen to as a result from a hystercotomy???
Does this make sense to anyone? How does a perfectly healthy women go from being completley healthy to looking like a very sick person?
Does anyone know if there is a way to stop her Burning Mouth Syndrome? Is the Mayo Clinic the only way to get real help bc all of these drs she goes too are saying shes a "medical mystery" with her symptoms.
Thank you very much and I willl keep you all in my prayers.
Armanda

[Rrae]

How WONDERFUL of you to be looking out for your mom like this!
When it comes to PN, answers can sure be hard to come by.......my heart SO goes out to her (and the rest of your family)....

You ask some VERY good questions! The Peripheral Neuropathy forum is very active and FULL of very knowledged folks who will be glad to give you their all...
Here's a shortcut link to get you to that forum:
http://neurotalk.psychcentral.com/fo...sprune=75&f=20

I'm about 10 years behind your mom (agewise), but have struggled with this madness for 6 years. Oddly, I got a hyster within approx 6 months of my symptoms setting in also! It started out as horrible knee pain (both) and subsequently consumed both legs and robbed me of the better part of my 40's ....
It might be very difficult to get a Dr to pin it on the surgery.....she's probably already been told that her hormones probably went out of whack and the whole bit, right?

All I can offer you at this point is my complete empathy to her situation and to say that reading up on the info section (at the top of the PN forum) will certainly be of great benefit....
You've found a great place for the support you need.....and even if your mom isn't too crazy about the computer (can't blame her ).....you could probably print out some of the important information and health tips. I know that many people put in alot of time and effort to bring us this very valuable information and it may save you alot of hassle of going to the dead-end Dr's looking for answers. You'll eventually find the right one for her, but at least getting a good grip on what PN is all about may help you in knowing which Dr's to avoid.

I wish you my best....
Rae

[Darlene]

Armanda ,

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. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene

[dahlek]

My Husband & I have done it too much, too often to want to recall? But..in your case? I'd try and talk to her doctors? Sometimes they will, others not? But to get a truly good assessment and get the right help for her? It's something you've got to do...ASK! Find out what social services are available where she lives and IF you can maybe get some sort of medical power of attorney to help both your mother and dad get the best care needed when needed? Burning mouth mite be Sjogrens syndrome...Listed here? http://neuromuscular.wustl.edu/antib...n.html#sjogren
Sometimes doctors, do understand the problems of children dealing with long and short term care issues of their parents far away... We got lucky? I truly hope that you do get that way too!
And Trust me? The medical is easier than the financial! That stuff is downrite scary! But? It does work out well after all...
My heart goes out to you and your family! This stuff is NOT fun? But, best to now get some medical, practical and financial issues sorted out now? In so doing? It can be easier to get good things DONE! Hugs and hope truly!
's - j

[armanda]

Wow I was totally right when I was reading all the post before it dawned on me that I can join how nice and caring everyone is. Thank u for the warm welcoming and the wonderful information. I love the idea of printing out information and just mailing it to her. I am scared that the internet might be a little overwhelming and my mom is frustrated at life and the internet and computers r very frustrating. And I love the idea of trying to get some kind of medical power of attorney. I love the idea of trying to call her doctors. I spent another 5 hrs last night researching and researching. Can I ask u guys your opinions on things that I find? I HAVE no one to talk to bc no one I know even knows anyone that has neuropathy and BMS. So....as I was researching I found this website that is backed by mayo clinic, webmd, neuropathy association and a few more important respectable companies. This website was selling neuropathyformula support suppliments. It says that the success rate is 92percent and if it doesn't work in 4 months 100% money back guarantee. It has a lot of that ALA which is the most powerful antioxidant And the only antioxidant that can renew its self. this supplment has b12and another b vitamin. And I read that ALA 600mga 2 times a day has a 97 percent success rate. Do u think that the the neuropathyformula support suppliment would help her and all of u guys. I know there's a lot of companies out there trying to prey on peoples desperation to get out OD pain but the mayo, web me and neuropathy association stands behinds this is the only reason I think it might help .
Also what about B 12 shots? It may not take away the loan but the amazing feeling u get from these shot and the energy and it makes the ALA work much better.
Thank u for all the wonderful support and advise. If I can't physically be around my mom to help I'm gonna research til I have exhausted every avenue and I will make sure to share anything I might discover that will hopefully help every one in this sweet community. It feel s amazing having support and understanding sweet people. I just hope on day my mom can get this feeling of support from people that can really relate. I hope wherever u r that Spring is in your air. Have a great rest of the week and I look so forward to hearing from all of u.

[alandale815]

I have had a hysterectomy myself and I have had BMS for about 4 years, can't remember. I can sympathize with anyone who has this terrible BMS. All I can say is pray, pray, pray. I was a very angry woman last year, because of this, but I prayed everyday and I can handle it much better this year, but of course I still have it. I even have a form of neuropathy and all of this seems to be on the left side. Good luck and God Bless to you all!

[armanda]

Originally Posted by alandale815

I have had a hysterectomy myself and I have had BMS for about 4 years, can't remember. I can sympathize with anyone who has this terrible BMS. All I can say is pray, pray, pray. I was a very angry woman last year, because of this, but I prayed everyday and I can handle it much better this year, but of course I still have it. I even have a form of neuropathy and all of this seems to be on the left side. Good luck and God Bless to you all!

Hi there!
I am so sorry u have BMS. I think betWeen BMS and NeUropathy the BMS is causing my mother more grief. I try and imagine what its like to have that continueous pain and it tears me up inside. Can I ask you a few questions bc I have not had a whole lotta luck finding anyone that has the exact same symptoms as my mother?

First have u tried taking ALA supplements? I mean the really good kind of ALA or even ALA shots for ur BMS? I have read that helps.

2nd how long after your Hyster did u start feeling the BMS?
And did u ever go back to your surgeon and tell the dr. the side effect from the drs hyster he performed on u?

3rd Have u ever tried going to a BMS clinic?

4th what kind of therapy or ways have you tried to get rid of BMS?
Any sort of medication that made it not as bad?

5th is it getting worse or staying the same?

6th Do u know other people that this has happen too?

Ok I'm sorry I won't try to overwhelm u so I will stop at those questions. I have been researching this 24-7 since she told me about it and I cannot find any answers. I know for a fact that this hyster caused this bc my mother was as healthy as can be.
Plz stay in touch and if I hear anything that might help I will let u know.

[mrsD]

Welcome to NeuroTalk.

We discuss methylcobalamin (active form of B12) and ALA on our PN forum:

http://neurotalk.psychcentral.com/forum20.html

Here is the B12 thread explaining all about it:
http://neurotalk.psychcentral.com/thread85103.html

ALA has a new form, more effective and more potent:
called r-lipoic acid. This form you only need 100mg once or twice a day. ALA is a mixture of r-lipoic and an inactive version...so using it is rather redundant today.

To the best of my knowledge, r-lipoic is not in mixtures yet.

Methylcobalamin should be taken if your B12 tests show below 400. You really should get tested to see where you are. Not all neuropathies are due to low B12.

[alandale815]

Dear Armanda:

Yes, I tried ALA supplements, didn't help.

I have also tried Vitamin B, no help.

I live in Kingman, AZ and my Husband and I have never heard of a BMS clinic.

I was diagnosed by a dentist.

I am taking Carbomazapane for Neuropathy, which seems to be going on the same time as the burning mouth, sometimes. I take 400mg per day. But, it still burns.The burning happens every single day! I have the BMS 7 days and most of the time it is on the left side, where the neuropathy is. Actually, the other day it was all over right and left and sometimes my gums and tongue burn. Left side and tip of tongue.

Cold water helps.

I have stopped checking the internet for information on BMS, because it was making me nuts.

I don't know anyone else who has BMS.

I have not been back to my surgeon. I do not have any health care. But, I have been to a doctor.

I have been checked for auto-ammune disease's and Lupus. I have also had an MRI and a CT scan and they found nothing up there. LOL My sense of humor has finally come back after a year of being very miserable and angry.

That is all I can say.

This disease is an "enigma".

I will definately put some information on here if I find out anything else.

I hope your Mother can finally come to terms with this as I have, but I still pray everyday. St. Blaize is the Patron Saint of mouth problems.

Good luck and God Bless you and your Mother,

Dale

Originally Posted by armanda

Hi there!
I am so sorry u have BMS. I think betWeen BMS and NeUropathy the BMS is causing my mother more grief. I try and imagine what its like to have that continueous pain and it tears me up inside. Can I ask you a few questions bc I have not had a whole lotta luck finding anyone that has the exact same symptoms as my mother?

First have u tried taking ALA supplements? I mean the really good kind of ALA or even ALA shots for ur BMS? I have read that helps.

2nd how long after your Hyster did u start feeling the BMS?
And did u ever go back to your surgeon and tell the dr. the side effect from the drs hyster he performed on u?

3rd Have u ever tried going to a BMS clinic?

4th what kind of therapy or ways have you tried to get rid of BMS?
Any sort of medication that made it not as bad?

5th is it getting worse or staying the same?

6th Do u know other people that this has happen too?

Ok I'm sorry I won't try to overwhelm u so I will stop at those questions. I have been researching this 24-7 since she told me about it and I cannot find any answers. I know for a fact that this hyster caused this bc my mother was as healthy as can be.
Plz stay in touch and if I hear anything that might help I will let u know.

[alandale815]

P.S. (see my reply above)

I take Baclofen for my neuropathy.

Dale