Ms & neuropathic pain
 

I have MS over 25 years it is now Secondary Progressive.

I chose a neurologist who is supposed to be one of the best @ treating MS. When he speaks @ MS events he speaks elequently about the importance of QUALITY OF LIFE & MANAGING A PATIENTS PAIN but i n reality HE HAS DONE NOTHING FOR ME.

Despite my explaining to him my prior experiences with drugs like NEURONTIN; LYRICA etc. ALL HE DID was TRY these medications again. I had the SAME SIDE EFFECTS & MOST OF ALL - NO RELIEF FROM THIS UNRELENTING PAIN.

If the pain scale went from 1 to 20 instead of 1 to 10 it still would not be high enough to measure the level of pain I feel on pretty a daily basis. I feel as though my body is sitting in a vat of hot oil; then just to make sure I am in a sufficent amount of pain "someone" stabs me with a hot poker REPEATEDLY throughout the day & night. It might be my face, an arm, a leg, my butt - THERE IS NO TELLING WHEN, NO WAY OF STOPPING IT & IT IS DESTROYING ME.

I'm sorry that you are suffering so much right now Peg.

What does your neuro say when you ask him about his not following his own medical advice ? In his talks does he specifically mention the use of narcotics or does he just say to try to manage the pain ? I've seen quite a few pain management doctors who don't prescribe meds at all.....it's injections or nothing.

Have you tried any 'non medical' treatments like massage, accupuncture, hot packs, cold packs, pain creams, epsom salt baths, relaxation, or visualization ? Non invasive treatments like that don't eliminate my pain, but they can cut it down.

There was a time when my pain was unbearable. Using a mix of measures, including narcotics, thank God my pain is more bearable now. It's still not well managed.....my activity level is severely limited by pain.....if I had stronger meds, I could do more, but my doc wants to manage things with lower doses if possible.

How high were you able to go on Lyrica and Neurontin ? Were you able to take increased doses for a few months to see if it had any effect ? Neurontin did nothing for me at lower doses, but now it does help. My side effects are not pleasant....weight gain, diabetes, hot flashes, but that beats unbearable pain

Welcome to Neurotalk.

I've been reading your posts, about your history, etc. I am not really experienced with MS issues, so I only read here to learn etc. But one thing stands out for me at least is the extremely high level of pain you are suffering with. This seems more acute that the standard central pain issues, other posters often describe.

I post mainly on our Peripheral Neuropathy forum here, and am wondering if you were ever tested for low B12 levels, or Low Vit D (which is being aggressively done now in MS patients). ???

It is possible to have other issues besides the MS that can creep up on one. For example our lab ranges of 250-900 in US are very low on the bottom end. Many countries start at 400-500 for the cutoff. We have seen posters here with low "normal" levels who had significant pain and disability. Medical experts have studies out there now to help educate doctors, but not all of them follow the newer guidelines.

People with long term low B12 end up disabled, blind, in pain and worse. This is called combined degeneration of the spinal cord.

So if you come to our PN forum, there is a B12 stickie, and a new Subforum with many posts of an informational nature to look at. Consider this an invitation of sorts.

I would also like to say, I think your dog is very cute and he/she obviously loves you very much. You are lucky to have her.

Hi Peg ~ There is NOTHING sadder than a doctor who does NOT LISTEN to his patient!! :mad: This just makes me so mad! And the trouble is, there isn't anything you can do about it unless you want to actually CONFRONT him about it ~ and if he's like most Neuro's, he'll get highly insulted. I think if I were you, I'd find another Neuro ~ a different doc couldn't do any worse than THIS one is doing, right??? Someone else is BOUND to be better than this one.

I go to a GP, and i've had central pain for 25 years now. It's gotten just plain out of hand, but at least my doc is tryiing everything he can think of. I started going to him a little over a year ago, so i'm gonna give him more time.

Bless your heart ~ I know that changing docs is a hassle, but you HAVE to do something dearheart. You can't continue on like this. With that kind of pain, you'll drive yourself insane - believe me, I'm almost there myself.

I'll keep you in my prayers and pray for relief from this horrible pain for you! Take care, and God bless. Hugs, Lee