Hello all....

I feel like know you all so well as I have lurking here since the beginning. I had just introduced myself on the old BT when it went down. But here is a recap.

44 year old married woman with 5 year old boy. currently dx with PN since May of 2006. Per nerve conduction test have axonal neuropathy feet and lower legs. Working dx in Late Onset Alcoholic Neuropathy.

History includes Rhuematic Fever at age 19. Endometriosis, fibroids, one pregnancy at 40. Alcoholism. Got sober 1n 1998. Sober thru AA since (8 1/2 years). Major Depression being treated (doing pretty well). Dx with Morton's Neuroma both feet 3 years ago. Had them surgically removed...THEY GREW BACK!...had them removed again. After second surgery, that's when the PN started with a vengence.

Initial Symptyoms - the horrible burning, muscle twitching in legs.

Neurologist tried Neurontin...I didn't like the weight gain and blurrry vision. We lowered the Neurontin and added Topamax. I also take Baclofen for horrible nightime leg cramps. I also take Prozac. I also take the vitamins/minerals as recommended by Mrs. D. My doses are:

Neurontin: 300 mg 2 times a day
Topamax: 100 mg 2 times a day increasing to 150 mg 2 times a day
Prozac: 40 mg a day
Baclofen 20 mg once at night

I have had a slew of blood tests...all normal....heavy metal screening...normal...Brain MRI..normal....back MRI...normal.

For a while all was fairly ok, yet I wasn't convinced it was late onset alcoholic neuropathy...if it was it would have a very slow progression. Well the progression is really progressing. I know not only have the burning, but the shooting/stabbing pain and the broken bone pain. The shooting/stabbing pain is now in my lower legs, upper legs, genital area, lower and upper arms, and truck side, and my upper back. This really concerns me. My neurologist is increasing the Topamax to deal with the pain and is ordering some tests for Sjogren's because I also have painful eyes and have funny symptoms (tonsil stones) in my mouth. My face is also starting to hurt.

I am wondering if anyone else has had similar progression from hands and feet to their body? I have also lost 25 lbs since September, but that is easily traceable to the Topamax and a change in diet. Besides the neuropathy, i feel ok. LOL! The constant muscle twitches in my lower legs has started to spread to my upper legs to, and sometimes arms. Not even Slo-Mag and Potassium seem to stop them.

Anyway, I thought I would introduce myself, say hey, and just see if anyone else is getting poked with a cattle prod tonite?

Ann

Hello Anne, and welcome to the forum
You would think that if the alcohol was was the cause then by taken the affender away, to my way of thinking, things should improve not progress.
I use to love a drink of beer myself, but i could always expect after having some beer that approx 1 hour later my feet would start burning like hell again, so i had to give it up all together as prediabetes was causing my PN.
I am sure others will come along shortly.
Brian

I hate to sound like a broken record, but here goes: check out the charts on lizajane.org, and insist on getting the tests for sensory neuropathy.

The symptoms you have are not typical of alcoholic neuropathy, which, like most toxic neuropathies, usuallly starts with the feet and doesn't involve the hands until quite severe. You seem to be describing something that evolved quickly and included area of your body much more central than that. If you could describe the history of your symptoms more clearly, like a time-line, that would clearer. But if my impression of what you are saying is correct, it sounds like it could be a different process, and that you deserve a full blood workup for other causes.

Also, there's no reason for alcholic neuropathy to begin after you're sober, if that's what happened.

Can you collect all your test results from your doctor and organize them for yourself?

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?
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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.