I am in the process of getting all my labs and putting them in your worksheets. Thank you so much for putting all the effort into those spreadsheet. I DID stop drinking all alcohol on March 1, 1998. And the PN started approximately May 2006...that is why I've had a hard time agreeing with Alcoholic Neuropathy Dx. The neurologist stated that he thoght I had done the nerve damage when drinking but it didn't show up until I started the normal age process and my nerves started to "die off". Then the damage became noticable. But with the recent rapid progression, I think the Alcoholic neuropathy DX is off the table.

The initial symptoms I had were as follows:

foot pain in ball of foot (burning) during pregnancy in 1999. Thought this was due to weight gain. It was a burning pain and was relieved when I got off my feet or took my shoes off. Had baby - finally lost some weight - still had burning foot pain (both feet at this point). Diagnosed with Morton's Neuromal. First Surgery June 2005. Neuroma's grew back by November. Second Surgery February 2006.


May 2006 - experienced the following: severe burning pain both feet tops and bottoms. feet cramps. nightime leg cramps (every night). lower leg twitches - hair loss - depression (lifetime thing - sometimes worse) - right wrist pain - jaw pain - night sweats - cold feet - heart palpatations. (much of this probably was anxiety too)

Summer 2006 - pain in feet went from burning to shocking to stabbing to broken bone pain. pins & needles started in tips of fingers.

Fall 2006 - started Sacral Occipital therapy and tried no flour/no sugar meat & veggies only diet. Diet seemed to help with pain levels but couldn't maintain it past 3 weeks at a time. The therapy helped tremendously getting me aligned and my jaw felt much better. Felt great for a while. Also started on the Topamax. Between diet and Topamax, lost 25 lbs. back to pre-baby weight!

Around Christmas to now, started to notice spreading in my hands. In the past two weeks the prodding/stabbing pain has significantly expanded to include my upper back, side, trunk, upper arms, and upper legs. My neuro is increasing the Topamax to 150 mg twice a day. Feet are burning, rock in sock feeling, shocking, broken bone feeling, etc. Fasiculation in entire leg now.

I am also noticing my head and face is becoming really sensitive and painful. For anyone out there who has long hair...you know how it it when you have your hair pulled tight up in a bun a long time and then you let it down and your "hairbones" hurt. My hair is starting to feel like that all the time. And the other day, my lady was waxing the ol' eyebrows and plucked a straggler and I thought I was going to go through the roof. The nerve she hit went from my brow and curved down my cheek to my teeth. Ouch...I actually took an extra Neurontin to get rid of that pain. My eyes are so scratchy!

Anyway, that is about as good a timeline as I can give. Thanks for your input......

You may want to find a Neuro that is a PN specialist, should give you more of a chance to finding the cause to your troubles.

I agree with Liza... dump the alcoholic connection.

I am looking seriously at your Topamax. This drug creates a metabolic
acidosis in patients, by lowering bicarbonate levels. When that happens,
you get alot of neuro symptoms!

Basically I think this drug is HORRIBLE in the long run.
http://www.hc-sc.gc.ca/dhp-mps/medef...hpc-cps_e.html

I think you should discuss another treatment modality with your doctor.
Many of the serious side effects of this drug were discovered post marketing.
(glaucoma, kidney stones, acidosis).

It's alcoholic neuropathy if You have had one drink a month! I had a neuro like that! He's no longer my neuro and he INSISTED I was drinking, and ingored my pleas to change meds and concerns about progression similar to yours--pn marching UP the body..to stop-where? the brain?

I changed neuros and got second second opinons...turned out that extended pneumonia for weeks prior the PN onset had set off an auto-immune reaction called CIDP or auto-i neuropathy.... There are treatments. So, I ask, did you have a long drawn out cold, flu or the like a bit before?

I did not have access at the time to LizaJane's sheets - but all the tests I'd had were on them, and, in the right sort of 'progression' to diagnose my problem. With treatment, the progression can be stopped or seriously slowed, and some sort of life can be had...

GO For it?

Super good thoughts for finding the right doc! It can really make all the difference- j

I had a strep infection right before my second neuroma surgery in February. That's a long time ago and the neuropathy symptoms started in May...don't know if that could be connected.

And in defense of my Neuro...he is extremely well regarded and qualified. And I am an Alcoholic, albeit a sober one, so his initial dx wasn't so obscure. It's just not relevant now.

Thanks for all your input. I'm going to talk to him next week.

Ann

Hi, just wanted to pop in and say CONGRATULATIONS ON BEING SOBER SINCE 1998.

That's great!!!! I know it's hard and you're on a hard road with the PN but the guys and gals on these boards are great.

You'll get lots of help.

All the best,

Melody

[QUOTE=dahlek;64208]It's alcoholic neuropathy if You have had one drink a month! I had a neuro like that! He's no longer my neuro and he INSISTED I was drinking, and ingored my pleas to change meds and concerns about progression similar to yours--pn marching UP the body..to stop-where? the brain?
GO For it?
.................................................. .................................................
Thank god you got rid of him Dahlek, what an idiot, in my early days of PN i come across one that was a " professor of Neurolidgy ", he give me a Nerve conduction test and wrote back to my GP that i had no signs of Neuropathy even though i kept on telling him my feet were burning madly.

Hello Ann-Elizabeth. Just wanted to say welcome. You certainly have found a place that is superior in caring and sharing. We all have different experiences, but by sharing them, we help each other in many, many ways. Glad to have you aboard!

Your neurologist may have a good reputation, but it doesn't seem he's paying attention to the form and progression and timing of your symptoms.

They sound much more like what people suffer from when they have an inflammatory autoimmune neuropathy, or autoimmune from other causes. It doesn't sound like plain old idiopathic and definitely NOT alcoholic.

Please get your neuro to focus on this. Bring the charts and ask for all the neuronal antibody tests, PLUS, an emg and ncs. You haven't mentioned any studies.

Also, a good general workup for the rest of possible causes of pn, and nutritional eval: thiamine levels for instance, which ARE lowered in alcoholics and cause their own symptoms.

Advocate for yourself! You deserve it.

BUT, you can't just sit back and WAIT!

I am near a few teaching hospitals, and I just dialed from my plan's covered doc's list in the region! I got an appt in one week w/the head of one hospital's neuro dept [he was asst head at the time]. It was luck, but in the setting up of this appt the two other 'major hospitals' had appts to be had within 3 weeks of call. Hey, I took the first I could get! I struck gold and can still walk. [Umm, except when I keep breaking feet]

A couple of years later I had a referral from another neuro about continuing IVIG..to a different hospital neuro dept head..That neuro head flatly stated that 'IF I had CIDP, I'd had to be in a wheelchair!' I replied: I am NOT because I received the IVIG in time, and, asked for and received PT-- Sooo I'm NOT in the chair, thank you! You could see the gears turning and squeaking a bit in the re-thinking of things and conceded I just might be right.

Usually the chief cheeses see us when it is too late! Don't give up or give in!!! It's your life at stake and the ability to live it well.

Have faith in yourself and find a doc who has a bit of faith in YOU! Hugs-j