Might Finally Be On The Right Path
 

:p well 4 yrs,3 prim drs,2 neuro,2 rheumotologists and i think i finally found a dr who actually might bring closer to a diagnoses.hi my name is kathy and im new here.i guess my troubles started 4 yrs ago with an unexplained sore throat which progressed to neck pain,rushed to er-they thought i had meningitis-i didnt-leg pain started a few days later-excrutiating pain in both legs.mind you this really started about 6 yrs ago with my big toe going numb for about a yr and i kept losing my balance.4 yrs later and my legs hurt so bad it criples me,i fall into walls,chairs,people whatever is there,muscle twitches and spasms,hyperreflexes,supposed carpal tunnel-had the surgery for it,but arm still goes numb,trouble regulating body temp-husband gets mad when i open windows in 20 degree temps.lol.i have major memory issues,but neurosurgeon attributes that to the mass in my pinneal gland in my brain.i had ant cervical fusion in june b/c of car accident in 12/05.i seen a new neurologist on monday and after taking a thorough history and some tests,shes leaning towards pn-wants nerve cond tests and vascular studies.sorry so long.finally a dr who doesnt look at you and shrug-i dont think they want to do the work involved with dxing you,unless it hits them in the face.this dr seems real on top of things.ive been ruled out for lyme 3x's,lupus 2x's,rheum arthritis,thyroid,ms, and in 4 yrs no one mentioned pn.im hoping by coming on this board i can meet some new friends and maybe get some insight.thanks for listening.oh i also was on tramadol for 4 yrs and by far was the best med until recently-i was up to 200mg 2x's a day(400mg) total.i also had taken neurontin which did nothing except make me sleepy and klonopin,same side effects.my primary dr just started me on methadone(i thought it was just for people weaning from heroin)i take 10mg 2x's a day and so far is working better than the tramadol. thanks

Welcome to the forum Crazycare4 [ like the name :D ]
Boy oh Boy you certainly have had your share of problems, i think i seen 6 doctors[ gp's] before i found someone that was really willing to try to help me and unfortunetly its not uncommon, i've seen lots of the members here say the same thing.
I had the same experience with Neurotin, others here use it, but it just made a zombie out of me, i couldn't stand it, and then was put on 300mg x 2 Tramadol SR & Endep as well, that done the trick for me, i mean it helped anyway.

That heat sensitivity is very common with people with small fibre damage, the warmer the weather gets the more burning occurs.

If you go to the front page of this forum look up top were it says " Important Stickies " there is some very good refferances there about Peripheral Neuropathy and there is also excellent information to help yourself with diet, supplements etc, by Wings 42, i think there is over 200 known causes of it, and then there is some with idiopathic neuropathy were they just can't find the cause.
B12 is well worth checking out too, Rose [ our b12 expert] has recently started a b12 website, i think is still under construction but its well worth looking at.http://roseannster.googlepages.com/
There will be others along shortly,
all the best,
Brian :)

I also take methadone for my PN. It has a lot of advantages, especially if it can be used as your sole drug instead of taking a bunch of others. Also, it has been around a long time and so much is known about it - and since it still has a large user base, more info can and does turn up. It is not just for people with an addiction and is often a good choice for chronic pain.

Ok - with that intro, you knew there had to be another side. It is a tricky medication to prescribe properly, in part because of its length of effective action and even more so because of its long half-life. It can be all too easy to build up excessive concentrations in the hands of an inexperienced doc. I think it is extremely important to have a very knowledgeable and very seasoned practitioner doing the prescribing.

As further proof, see this thread:

Methadone

rfinney

thank you
 

thank you for the warm welcome
i was so nervous trying the methadone-i had so much success with the tramadol,i hated that it was taking higher and higher doses to just make me somewhat functional.the dr was very explicit in his instr for this new med-dont miss a dose ever and see me in 5 -7 days so he can see how its going and to make sure i call him before my meds run out so he can prescribe more.i think whats bothered me most these last 4 yrs is not having a name to this lunacy.i just keep getting worse and nobody can tell me why-hopefully this new doc can get to the bottom of all this.i feel so much better chatting with other people who are feeling the same way i am-sometimes i feel so alone,my family is sooooo supportive but they just dont understand how i feel when i cant walk to say the kitchen because my legs hurt so bad.thank you all again for your warm welcome.kathy

methadone reminder...
 

I'll put this up again.

Methadone is the ONLY opiate drug that can affect the heart.
New data has surfaced about it..which many doctors are unaware of.

It is convenient, cheap, and effective for many.

But you really should have an EKG to rule out any long QT traits if you
have them. (this is a genetic variance).

Here is a link to my Methadone post:
http://neurotalk.psychcentral.com/showthread.php?t=1120
post #4 Please read it carefully.

In the news recently was the death of Anna Nicole Smith's son, who died as
a result of Methadone mixed with antidepressants. (both can prolong QT)
People with low magnesium and/or potassium events may also have
a reaction to methadone. Diuretics, stomach flu, or poor diet may predispose one to low magnesium, and hence QT becomes more critical.

Welcome CrazyCare4
 

When I first saw your name CC Riders popped into my brain(an old song) I wish your doc would have put you on Lyrica with the Tramadol as its works very well together. Have been on it now for eight months and am able to get out and work around the house 4 or 5 hours aday. The VA finally diagnosed my condition as Polyneuropathy, however if I had gone somewhere else it would have been some other kind of neuropathy. So many people are going all over the place looking for a diagnoses and when they are given one their main concern turns to pain management. You have come to a respectable forum where people really care (they are afflicted also). My best doctor is one who maintains a family practice and if I find something on these boards I take it to him and if its reasonable I try it. The neurontin as you have expressed was a real bummer. The B vit are a big plus, especially as an energy booster. Lyrica at 9pm is my last med, Tramadol after 5pm keeps me awake as does the B vit. I sleep very well, its in the morning that I'm stiff and sore( from working around the house), it takes the meds about an hour to kick in and the burning subsides. Good Luck and hang in there(like we have a choice):)