[eclein]

I come from a very artsy musically inclined family-Father: Artist, Commercial Artist, Sax, Clarinet, Violin, Mother: Classical Harpist with several Orechestra's, Pianist, Brother: Guitar, Keyboards, Engineer, Sister: Artist, Museum Curator, and it goes throughout into Cousins, etc..

I played drums..highly co-ordinated, fast, animated...up until about 2 months ago when at 52 nearing 53 the Peripheral Neuropothy I was diagnosed with 12 years ago and made my legs numb reared its ugly head, full bore, relentless, In two months I've gone from that Ed to todays version who cannot open a DVD case, I hold things in my hands with a death grip only to watch them, watch them slide out because I don't have enough of a grip. I used to twirls drums sticks on the tips of my fingers-not like what you see most drummers do, I did a helicopter blade twirl maintaining balance and speed with one hand while playing with my feet and other hand-I can't hold a stick today, and I try and try and try.

I'm writing this to let people know about Peripheral Nueropothy and its devastating effects -not, and I repeat not to make anyone feel bad for me! It sucks, I got it, I'm going with the flow-what little flow I got---LOL

12 years I hummed along with what now I would call minor numbness from my knees down, feeling in my feet was hit or miss and occasionally I hurt my toe or burn my feet on asphalt and not realize it until visible proof existed.
 Today in 2 short months I have no feeling except for two vital areas from mid stomach down to my toes, Both of my hands are now fully involved and my left arm up to my elbow is numb--the problem is--and the jury is still out on this because of the eigth doctors I've seen so far none, thats right none can come up with a list of possible things let alone a diagnosis. It wasn't until the week before Christmas that things really escalated for me, I would start loosing my balance, near falls and alot of physical lack of co-ordination akin to being drunk. One morning I got up and turned to go to the bathroom but my foot that my mind told to "go to the bathroom" decided to head for the kitchen and the fun began. I'd go to get in my car and gently lift my leg up to sit in the drivers seat only to kick the dashboard or steering wheel--I couldn't regulate my muscle output, what I thought was a little move might be huge one time and smaller than needed the next. I must have had panic attacks and went to the ER two days before Christmas thinking I was having a heart attack, and I told every nurse, doctor, technician that my legs were numb and the pain was killing me-I was released to home a day and half later.

At that point I didn't know what to do, I thought I did what your supposed to do, but things worsened and worsened and falls were happening and I didn't eat for a week and finally went to another ER and finally got noticed. I am not Diabetic, a recovering alcoholic-yes, a current blood cancer patient-yes...the nerves are dying in my body starting out at the ends and working their way up and it burns like no other pain I have ever felt, sometimes anywhere and anytime I get stabbing pain (like someone is stabbing me with a knife). The burning feels like a blow torch being applied to the inside of my feet and hands, and the latest treat is what they call "pinching pain" which in my case feels like someone has placed a piano leg in the middle of my foot or like an old fashioned cartoon a dog has bitten me and is hanging on mo matter what I do. The amount of pain medication I MUST take is extreme and it still only gets me comfortable for 1 1/2 out of 2, ankles swell like thighs I'm fighting off a wheelchair existence and must use a cane or walker to go 10 feet to my bathroom. All my vital signs are excellent and outside of the swelling and blood issue I'm the picture of health except I don't work right anymore, the messages my nerves send is wrong, completely wrong and like an old PC its like my software is frozen and I mus wait...sometimes one step takes awhile to correctly place other times I'm walking without any aid for a short time.
 If you or anyone you know, love or even hate mentions numbness in the legs and tingling for no apparent reason, make them, force them to go get checked out so records can start to be kept and the 7 month wait to see a Nuerologist won't be so bad (they got me in, in two, soon I will see this new guy). If you-meaning anyone reading this- has a question about this disease send me a note and I'll try and point you in a good direction. I needed to write this for me and for you guys because I could never pay back what you all have freely given to me, but I can try!!

[bummrush]

I have CMT Charcot Marie Tooth,had you been tested for it?Nueuropathy,numbness,no grip,i have to wear foot braces because of what they call foot drop.

[eclein]

My feet are starting to exhibit that-my foot sometimes is well out of position and of course I can't tell unless I actually see it...The Neurologist finally gets his shot at me Tuesday, Pain doc Friday, Neurologist-Tues, Oncologist-Friday, could be an interesting week ahead---aaahhhahhhhhhhhhhhhh!!!!!

Bummrush--what else does CMT do to you---do you get the burning pain??

[drmike]

5 yrs. Ago on may 7, 2006 i was sitting at work, waiting for my first patient to show up and my body, from the middle of my abdomen down, went to sleep.
I couldn't walk out my office without falling down.went to several drs., starting in nh then going to boston.
No firm diagnosis yet. Was told i had several tumors on my spine, tested for ms, als, and several other neurological problems.
I can't walk without crutches, balance is a real problem, so is walking in the dark.
I can still work because i do sitdown dentistry, my jobkeeps me sane. I don't seem to have any hand issues yet.
Two years ago i fell and broke the head of my femur off, had a hip replacemet the next day, two days after that i had an mi, three days after that a four way bypass.
Keep your chin up, don't give up and try to be positive.

[bummrush]

Yes I do but there's no way it's as bad as what you seem to have.it's very much undiagnosed in lots of people it comes under some of the MDA stuff.I.take tramadol ga bape ntin and they rmination to get better both help I was surprised how much the tram works .It's easy to just google it and you can find out more.good luck to you in your strong determination to help others around here and any time someone beats booze I'm even more happy for them

[eclein]

drmike----You helped me more than you know!!! TY!!!!



I go to pain doctor friday, scary, as I'm on 5 mg percoset every 2 and MS contin 15 mg x 2 and 900mg  neurontin x 3...I'm afraid the pain doc will just take all the pain relieve away and I'll end up doing something crazy...a doc wouldn't just yank somebody off stuff after taking it so long and still no clear diagnosis right drmike?? I need to get a handle on how these pain guys will look at me....

[bummrush]

Since you have been screened for a bunch of stuff maybe just ask if CMT was screened for also.
 Also you know the med situation is what you need to stand up for it's your rightto adequate pain management without the bs of somebody telling you what's right or wrong or the great one that goes narcotics are only for short term use.The worst part of narcs is the Tylenol they add ,my liver has enough other things to worry about .

[rpf]

Ed,

As someone with decades long chronic health problems including chronic pain - although not anywhere on the level you're experiencing - I empathize, and know the frustrations involved with and difficulties in getting diagnosis and treatment (when there is some). Hang in there.

Best,
Rob

[ratso]

burning pain is very indicative of nerve pain, which usually doesn't respond well to narcotics. try asking your pain doctor about neurontin or similar (not a narcotic, non-addictive and usually more effective).


edit: woops sorry ed should read more carefully. you seem to already be on neurontin. you still have room to go up on your dose though - i have seen people that don't respond until they get up to 1200mg. not everyone has an effective response however.

[Phil A]

Ed - hang in there.  I was diagnosed with diabetic neuropathy a couple of months back.  It is mild for now and I have looked around a bit.  I am fortunate that it is mild and something that is at this point not horrible.

http://pressreleases.kcstar.com/?q=node/49074

http://www.prlog.org/10365970-doctor-provides-cutting-edge-technology-to-help-treat-peripheral-neuropathy.html

http://www.vigendo.com/case-studies/diabetic-neuropathy-case-study/

Right now I am just taking it easy and seeing if it gets worse.  So far, it is a little better than it was a few months back.

[satfrat]

I've been taking Neurontin and Ultram daily for 14 years now (since I was 45) for my diabetic dead feet. Unemployed for 3.5 years now, I'm down to 2400mg of Neurontin and 200mg of Ultram daily. But when I was standing on cement floors & wearing steel toed shoes for 35 years, I was maxxed out on both for over 11 years, 4800mg Neurontin and 400mg Ultram which helped me get thru 8-12 hour shifts on my feet in those God forsaken shoes.   
 
Neurontin is relatively harmless to the system & passes out the urine but Ultram is highly addictive and when I tried cutting my dosages down after losing my job, I had a fever & the cold shakes for 2 weeks. If I miss 1 of my 4 daily doses, within 6 hours the foot cramps start, sharp jabbing pain every 30-60 seconds of so which seems strange when I can step on a nail and not know it due to the nerve damage. So I don't miss my 4 daily doses,,, ever! 
 
But my neurothopy is limited only to my feet, I can't begin to imagine what Ed's having to live with nor understand how it can effect the whole body like that. Hopefully Ed will find someone with some expertise in this area who might have some sort of benefitial treatment that will enhance his quality of life. My heart goes out to ya Ed. 
 
Robin

[ratso]

yep you (unfortunately) stumbled upon the dirty "secret" about ultram. it is not an opiate, but it is an opiate "mimic" which means it fills the same receptors in your brain that opiates do (just not as tightly). so you get the same side effects as opiates, including withdrawal - just not as severe, in general. sadly, most people never get past the "it's not an opiate" part of this and think that it's harmless. it's not.

[eclein]

Thanks guys, I'm talking to all these social workers and doctors and they all say there are hundreds of people suffering from this. The fact that I had chemo may have been the trigger that got the ball rolling, my blood cancer can cause this but the protein level in question with that is not any more elevated than my normal elevation--not enough to treat so we all go back to square one.

These folks most in the later years just sit and suffer, I have had broken bones, absessed teeth-alot of them, arthritis, I even got punched out by the clarinet player in the HS band when I was youger and none of pain even if it were all combined at once would get more than 1/2 way to what this feels like and all these older folks getting chemo or diabetic and ( I better chill here--oops)..its a shame.

Anyway...I got troops here on my side, I get along with everyone and most people like me and will help and the folks at Moss Rehab are behind me, a bunch of doctors in my area and some folks from audicircle that advise me, video game with me and generally keep me distracted--thats huge, you have no idea!!
 I'm selling my car to my ex for her and my boys to drive so I'll save money there....we know where that money will go---ipad2 baby!!!

I have my moments I'd be lying if I said I'm fine for the most part I am, seriously I am but all this stuff sometimes proves a bit too much--it took five times to tie my shoe and thats 5 times and absolutely trying my absolute hardest to do it and failing, thats the hard part...so...being a good audiphile I bought a bunch of used In Ear Headphones to play with....LOL....and the tunes are excellent!!!!!

[rwolters]

Hi Ed,
I'm very sorry to hear of your situation. With all the doctors that you've seen I'm sure that they would have checked to see if you have a B-12 deficiency, but you never know. My wife had a variety of symptoms that had plagued her for a number of years. One of her problems was Peripheral Neuropathy in her legs. Initially doctors ran a bunch of tests and thought she had MS. But, that ultimately was ruled out too. Finally she saw a 2nd Neurologist who determined that she had a B-12 deficiency that was caused by Pernicious Anemia. Another Neurologist, who she had been seeing for 5 years, never tested her B-12 level.

After she was diagnosed with Pernicious Anemia she got a book called, "Could it be B-12?", that taught her a lot about B-12 deficiency and how to address it. In her case, with Pernicious Anemia, her body can't generate B-12 on it's own and she needed to have B-12 injections; daily at first and now every few days. Most of her symptoms have gone away. The Neuropathy hasn't vanished completely, but it is less bothersome, and fortunately it hasn't progressed in the last year.

In addition to Pernicious Anemia, I think B-12 deficiency can be caused by Diabetes and by eating a vegetarian or vegan diet. I also think that alcohol consumption can be a contributor.

I don't know if this will be helpful to you, but it's an easy thing to be tested for. Taking B-12 shots isn't too much of a bother and I don't think it's possible to get too much of it. It's made a huge difference in my wife's life. If you think it's something you need to be tested for, don't start taking any B-12 shots or pill preemptively. It will mess up the results.

Bob

[eclein]

Thanks Bob--we did check for that and I'm ok there but still take a B-Complex and Mutli Vitamin everyday along with additional folic acid...its wild like I said I think earlier I present OK until you see me try and walk or pickup anything then all bets are off...

[bummrush]

For vitamins. Check out Freeda

[satfrat]

yep you (unfortunately) stumbled upon the dirty "secret" about ultram. it is not an opiate, but it is an opiate "mimic" which means it fills the same receptors in your brain that opiates do (just not as tightly). so you get the same side effects as opiates, including withdrawal - just not as severe, in general. sadly, most people never get past the "it's not an opiate" part of this and think that it's harmless. it's not.

You know, I had a friend's husband, a hell of a subborn guy and a fellow diabetic who refused to take Ultram OR Neurontin OR any drug whatsoever cuz of his stance against the healthcare establishement. His diabetes was left unchecked as was his blood pressure and the poor bastard suffered with his foot neurothopy to the point that he couldn't even walk for more than a few minutes because of the pain, not that it ever went away when he was off his feet. I'll never understand why he would let the quality of his life slip away just because he didn't want to get "kooked" on any drug that he would have to take for the rest of his life. This guy suffered for the good part of his 30's and all of his 40's. He died at 53.
 
For me, it's maintaining a decent quality of life that waaaay overshadows the reality of being a pillpopper for life. Whether or not any of the 8 varieties of pills I take daily are addicting isn't even an issue when you realise that I'll be taking them for the rest of my life regardless. And I'm able to walk my dog 4-5 miles daily on the asphalt. I only hope Ed's able to find the same type of treatment options that'll get him "back in the game". 
 
Cheers,
Robin

[bummrush]

Good luck tomorrow Eclein

[eclein]

Thanks guys!!! Fingers crossed!!!

[drmike]

percocet,vicodin and other similar drugs won't do it long term. insomnia, constipation, and addiction make everything worse. my problem involves the myelin sheath around the nerves, the impulse conduction is all messed up. it's hard to imagine that you have to think about every step you take.
do what ever exercise you can manage, don't give into the dark thoughts you may have. look at what you still have, be positive.