[EHorst99]

I've been experiencing progressive PN for a bit over a year now. Initially, it was toes/feet/legs, but now its showing up in my hands and fingers.

I was wondering if others, who have been dealing with this longer, have ended up with their hands as bad as their feet. I've learned to live with and frequently ignore my feet situation, but can't quite imagine how do that with equivalent problems in my hands. We all use our hands every day for many things -- including typing this note.

What's been your experience? Do hands end up as bad as your feet?

[echoes long ago]

No, my hands have never become as bad as my feet. My hands became affected to a noticable degree in 2004, but are not nearly as numb or painful as my feet.

[mrsD]

When my feet were bad so were my hands.

At one point I could not lift a pot off the stove, or sign my name. I had a steroid shot in my right hand during pregnancy when I was at my worst.

When my thyroid was treated, both improved tremendously.
(but not 100%)
My hands only bother me now if I overdo some task.

The tips of two toes on each foot remain numb.
Doctors won't increase my medication for that...they go by
blood tests. Too much thyroid causes osteoporosis...so they are conservative about that.

My PN is not progressive that I can tell. I get flares and quiet times. I don't have autoimmune markers either.

[Leslie]

Originally Posted by EHorst99

I've been experiencing progressive PN for a bit over a year now. Initially, it was toes/feet/legs, but now its showing up in my hands and fingers.

I was wondering if others, who have been dealing with this longer, have ended up with their hands as bad as their feet. I've learned to live with and frequently ignore my feet situation, but can't quite imagine how do that with equivalent problems in my hands. We all use our hands every day for many things -- including typing this note.

What's been your experience? Do hands end up as bad as your feet?

The PN started in my hands, arms, feet, legs and face at the same time. There are times when my feet/legs burn that my hands don't and vice versa.

[EHorst99]

Originally Posted by echoes long ago

No, my hands have never become as bad as my feet. My hands became affected to a noticable degree in 2004, but are not nearly as numb or painful as my feet.

Thanks. That's encouraging.

I can't quite imagine an existance where my hands are as bad as what I'm experiencing with my feet.

But then, it seems like living with PN has been a gradual, incremental and increasing tolerance of accepting something that was previously unacceptable. When it starts at A and moves to B, I think "'A' would be OK to live with if I could just get rid of 'B'". Then C develops and I think "'B' would actually be OK, if I could just get rid of 'C'". And so on...

Others?

[diagnonsense]

My neuropathy started in my arms.
Being such they suspected myasthenia gravis. (nope)

I couldn't lift them, and had trouble holding them up.
I would also drop cans of soda onto my computer, which led to me drinking from covered bottles through the summer months.

My legs were ok, just some minor slowing when I walked, which they thought could have been my topamax which I take for migraine headaches.

I also had difficulty chewing, and would tire easily with it.

And strange headaches that were soo painful that I wanted to smash my head into something. (IDK)

It did eventually wear away, and then my feet became more affected by Christmas time.

My walking became less stable. I became very dizzy, and walked like a drunk.
I depend on shopping carts to get around.

Lifting my left foot.. well, sometimes it just won't lift.

My feet will go completely numb, to the point where I will literally beat on them and not feel a thing.
(this goes to a little above my ankles)

IDK if this is what you would call progression? But, its got me going back to neuro.

[mrsD]

I wonder if your doctors are testing your bicarb levels with that Topamax? This drug causes acidosis in up to 30% of people who use it.

Mild acidosis is hard to identify.
(paresthesias, weakness, dizziness)

I'd get that checked out.

http://74.125.47.132/search?q=cache:...lnk&cd=1&gl=us

[dahlek]

But, Mrs D is right that testing other aspects is key to finding out what is 'going on' and also why things are so hard to diagnose.

At my onset? over a three week period-first it was the toes, then the soles, then the fingertips.. but it got above the ankle bone and the palms of my hands and all of my fingers being affected [the searing burning and electrical stuff] before I called my GP who said: Go to the ER. During my 13 hour 'wait' the numbness in my hands progressed to above my wrists and the legs progressed to just below the knee. Something was WRONG! I had a very hard time even holding a spoon to feed myself...messy and embarassing for sure. Numbness kept progressing so I kept searching for answers. I was a hurting and unhappy camper.

It took me over a year to ultimately get diagnosed with an autoimmune neuropathy and treated. I was lucky that I WAS diagnosed so quickly and then treated! I have improved a lot? IN that I can type now, and walk and only use a cane when going out to places I'm not familiar with. 'Pain' is now only a serious humm rather than a roar.

Right now, tho, I am on other medications for other med issues and they are causing havoc with my hands. Please pay attention to the fine print available under the 'prescribing information' of any meds that you take-look closely at the 'side effects' waaay down near the end..not the info about s/e's during clinical trials. There is often some underplayed 'rare' side effects that are listed. Look at this aspect if you are on several medications, as some things can aggravate each other or you. Because of my own research I am now only down to 3 prescription medications on a daily basis, rather than the 7 I was on before.

I hope this helps to any degree. Hope and good things! - j

[jsrail]

Originally Posted by EHorst99

I've been experiencing progressive PN for a bit over a year now. Initially, it was toes/feet/legs, but now its showing up in my hands and fingers.

I was wondering if others, who have been dealing with this longer, have ended up with their hands as bad as their feet. I've learned to live with and frequently ignore my feet situation, but can't quite imagine how do that with equivalent problems in my hands. We all use our hands every day for many things -- including typing this note.

What's been your experience? Do hands end up as bad as your feet?

My SFN started in my feet a couple years ago with tingling and sharp glass pain when geting out of bed in the morning. My hands started maybe a year later, I think, with the electrical burning. By then my feet were in similar pain. Then, a few months ago, it started to move from my feet up the legs and from my hands up my arms. In he last 4-5 months, it rapidly spread to the rest of my body exterior. I can't explain the rapid onset and how it so quickly moved from the feet and hands. Back to your question, I guess I would say my feet hurt worse than my hands. I am on considerable doses of Nuerontin and Methadone, so it does limit my pain to some degree, though my tolerance is gaining and they are not as effective as when I started. Since I am not working now, I use my hands much less, which may contribute to them hurting less than my feet.