Desperate
 

I am a 46 year old guy and i have a mild case of polyneuropathie meaning i have a left foot where the front part is a little bit numb my right foot is becoming wurse
My knees are becoming more and more sensitive ,in the past i had some sport dammage.
The palm of both my hands are feeling stif and burning including my lower arms are this burning feeling to.I lost some strength in my hand and lower arms but not to much.Till tree mouths ago i even didn't now about this disease.I only had a numb big toe.
Reading about this disease and getting to now more about it makes me more and more desperate there is no cure for this there is almost nothing you can do.I still want to do so much.When i am back from work i am somethimes overwelmd with desperation , god i would exchange this for a serious but curable disease.I rather would like to have cancer then this

It is true, there is no cure, yet.
But there is a lot you can do, if you have the right doctors, and treatment.
If you are prepared to go out of your way in a search for the right neurologist who specializes in PN.... not any average neuro, or even a head of a dept that does not specialize in neuropathies.

You must find a PN specialist.
That's 1/2 the battle.

Then you can get the most up to date diagnoses & treatment and a regimen of meds that will let you live a 'normal' life.
Some compromises will have to be made. Possible lifestyle changes will have to be made. Medications will have to be taken.
But you can live a life without fear and desperation ..... if you get the right doctors.

I agree with bob that though there is no cure with the proper treatment it can become more managable. I know how hard it is to stay in the day but I am trying to do that myself. Are you under the care of the appropriate docs,dx tests,and treatment? Also for me though it does not take away with the physical pain mentally it has helped me cope by seeing a psych. Hang in there

I forgot to add, there are centers that specialize in neuropathy.

The Jack Miller Center, Johns Hopkins, Cornell-Weill,
some Mayo clinics (not all)..... to name a few.

A large hospital that is a teaching hospital,
affiliated with a university's medical dept,
and does research in neuropathy - is a good bet, as well.

There is a site, created by medical people and PN sufferers,
that lists all the tests known - regarding PN.
If you go to :
www.lizajane.org
you will find the tests, as well as many other aides
for those of us with PN, who want a comprehensive follow-thru, and
charts to download.... to keep up with results over time, & see the whole picture.

Read the 'stickies' at the top of the topics page (there are a few- so take your time) and learn as much as possible. You will have to be your own advocate- so learn as much as you can.
Being properly informed & educated is the only way to combat this problem.

I have a ? about the teaching hospital. I went to one in MI because of the suggestions here. Actually my best pain doc was from there but he was not a student and I would never of allowed one to work on me. I guess my ? is why a teaching hospital is suggested as a place to look. Is it cause they have better doctors in general or more research expertise?
Thanks.

I think the teaching hospitals tend to follow the research more actively. Private doctors only listen to drug salespeople, and attend the basic continuing ed, which may not be good, and is usually paid for by drug companies to just reinforce the drugs advertised (their product).
Also teaching hospitals see the hardest cases, usually referred to them by private physicians. So they have broader experience.

Some hospitals today are even limiting drug salespeople access.
The trend is to give Pharma less power over treatment.

A good example is Johns Hopkins, affiliated with the JH Medical school.
Cornell-Weill is the same situation. The Jack Miller Center specifically treats patients with neuropathies.

A good teaching hospital doesn't let students take over your case.
It allows students to examine you, under the supervision of an experienced doc. That doc is the one who treats, diagnoses
and prescribes for you.
There is the search - finding the right experienced doctor/neurologist.
(BTW-An intern is a licensed doctor, just starting his career- there is a difference between an intern and students)

If you insist on a specialist, a doc with PN expertise, at a large hospital with a large neuro dept - it will most probably (not certainly, but possibly) have one PN specialist.... maybe more. If the dept is treating a large number of PN patients, they will have the specialists to treat you properly.

If they do research in PN, they will have PN specialists.

Thanks for explaining this to me. I thought sometimes they allowed the students to practice that is why. When I had a procedure there I even wrote something in where I did not want anyone but the doctor to do any part of it. Better safe then sorry.
I think it is a good idea about limiting the salespeople. At my one psychs office there were so many cause the psych was the head of the hospital psyh dept it was unreal.

I have been very fortunate. I have had the same academic neurologist for 6 years, and he ALWAYS sees me. Now, I only see him 2 to 3 times per year, unless something major is up, or testing is done, but he does return calls. At worst, his nurse does, but usually, the nurse ends up having my doc call me...because nurse can't answer my questions.

The same holds true for my rheum and my GI....no students, unless they are in the room watching my appointment. My GI has a physician assistant that sees me first, but my GI ALWAYS sees me too. It has been this way now for the entire time. I have no objection to students, interns or residents peeking in on my care, but I want consistent care from experts, and so far, I have gotten it.

The biggest problem I run into is that it takes sooo much time to get in to see them....4 to 6 months out for appointments....unless there is something huge going on...and that has happened and they have gotten me in. We just don't have enough specialists....come to think of it...it is like 2 months to get into see my internal med doc too.

What is scary about this condition is that it can exacerbate and one can see a loss of function. I am going thru an exacerbation right now, and am mortified....I don't know what else they can do, given I am on IVIG, and won't take major steroids. Just gutting it out I guess.