Dealing with polyneuropathy
 

I would like to hear from anyone who has gone through a polyneuropathy. I was wondering if you were experiencing the same types of things that I am. I also wondered how you emotionally dealt with the shock of trying to go about life with that constant burning and dysfunction. Do parts of your body just go numb at times, muscles burn out and organs temporarily blink on and off? I guess it is different for everyone, but it would be encouraging to hear from someone who had gone through this and recovered. There have been some days that I really thought I was a goner because I kept dehydrating so much and couldn't get out of bed. Some of my muscles don't look so hot anymore. The worst part was that my doctor said "it's anxiety" All neuro testing requires a physician referral. It's hard to deal with that--the constant burning and mental shock of it, plus some idiot who tells you that it's all in your head. How on earth do you find a good doctor who won't just write you off when they can't see it?

Not good
 

Lily,
I'd think I needed to replace my doctor if he told me it's anxiety when I had the type of muscle problems you are telling us about. I did replace one doctor who told us it was all in my head. Later, I went to Mayo Clinic in Rochester, Minn and now have evidence in writing that it is a small fiber sensory neuropathy caused by Sjogren's Syndrome. That is an autoimmune disease.

I'd be getting me another doctor so that you can get a referral to a neuro, ..if it was me. :cool:

Billye

Testing
 

Hi Lily,

Sorry you are feeling so bad.... agree wtih Silverlady - you need to have some testing done to find out whats going on - it sounds like you have an HMO that is restricting you from seeing a neurolgoist at all? Or, have you seen a neurologist who refuses to do anything? You need to be your advocate - the quicker you can possibly find the casue - the better your chance of beating whatever this is.....

If you have an HMO - can you change primary care physicians - to one who will refer you corrently for diganosis? When I first got sick I had an HMO - they said since I had numbness and tinging - it was anxiety... I fought and fought them - and months later after having to leave my job finally made an offical appeal to the HMO to send me to a neurogist - who immediately found nerve damage and started doing testing.... the time I lost could have made a difference in my condition now - I dont know....

Please try to fight for yoruself - there are many causes for neruopathy - and a good neruologist would be the type of doc to start with... (check out the stickies for types, etc... also spreadsheets at www.lizajane.org which are a tremendous help - both for you to keep your medical records and help your docs order the tests you need!

Take care:)

Hi Lily
 

I've scanned your posts to see why you have neuropathy, and I see that at times you have said you have celiac disease, vit B deficiency and beriberi, bipolar, and maybe asperger's, as well as anxiety. So what I'd like to ask you is how you came to all those labels and what tests you've had done to make a clear diagnosis of exactly what is wrong.

If you had a vitamin deficiency, malabsorption, or celiac, you could get neuropathy which would improve. If you had idiopathic neuruopathy, you could find improvement using the recommended healing protocols in the stickies. But without knowing how the diagnoses were reached, it's hard to say what you are facing.

I'd suggest going to thewebsite I've set up at www.lizajane.org, and looking at the recommended tests for neuropathy. See what you've had, collect your results, and share them with us. You'll get better help here if you can share your mdical findings.

Good luck to you in your struggles.

Lily,

I think others - Billye, Kmeb and LizaJane - offered some good ideas.

I wouldn't stay with a physician who doesn't make referrals when it seems that such is appropriate.

LizaJane: Thank you for the link you included in your post :). I'm on the site now - reading.

Lilly, it's seeming as if you have...
 

been doing a LOT of reading of other's posts and the 'stickies'. At this point you are probably in info-overload rite now.
Let US help YOU to focus on the things you need to know for now, then later learn the other stuff that goes with the 'territory'. Save some of your energy for what little [it's seeming] LIFE you have now.
So, if you feel comfortable, post a quick and dirty summary about what all has been going on-what has been done for which what's and then we can more closely and accurately answer your questions....It's soo much faster?

You have found one really great group of people here - folks who have gotten run-arounds and non-treatments themselves...Each person gives good amounts of time and sharing of all they've learned to help others who acquire this wonderful condition -they don't stint one bit, because they have been where YOU are right now.

We can come to cope/live with it all...some to better degrees than other. You have to learn to 'talk the talk' to your doc so he can see that YOU aren't another pushover. YES you are SCARED SILLY STUPID! I know I WAS! What normal person wouldn't be? That 'anxiety' line? It's the equivalent of those currently 'recalled' dog foods- into the compost bin or better the incinerator!

So share, let us help, and well, maybe we really can!? Hugs for now - j

I agree with all previous posts, get rid of that idiot of a doctor and find another doctor that is willing to help you, ask to be reffered to a neuro that is very experienced with Neuropathy patients, don't just settle with a normal neuro, you need a neuro that is very experienced with PN, then you will have the best chance of finding out what is causing your troubles.
When i first found the PN board, one of the best bits of info i received was to find a good neuro that really knows about PN, so searched around and come across a Neuropathy Associaion in my state, so i emailed them asking for a recommendation for a good PN neuro and the director told me of 2 neuro's that he highly recommends, so that was good enough for me, so i asked my GP if he could give me a referral to see one of these neuro's, which were about 2 hours drive from were i live but i didn't care about that at all, but my GP said " there are plenty of neuro's locally, they are every bit as knowledgeable as these other neuros your asking to see in Melbourne, why travel all that far ? " its a long story but i held my ground and insisted to see one in Melbourne and he eventualy wrote out a referal for him.
This PN expert found the cause of my PN in his first load of tests, it was Prediabetes, these days i am nearly fully cured so it really pays to have the right doctor looking after you.
good luck
Brian :)

Brian, just curious, was your glucose test normal, in other words - was there any reason to suspect pre-diabetes? Thanks for the info.