[PegMeerkatz]

I usually post in the MS forum but maybe someone here has more insight into this problem.

I have secondary progressive MS this brings with it a whole host of problems besides mobility issues, one of these is CHRONIC NEUROPATHIC PAIN.

My neurologist is USELESS when it comes to pain; we go round & round with the usual NEURONTIN, LYRICA etc. For whatever reason they do not work or I have side effects yet after running the gambit of these meds he seems to start all over again even when I remind him this hasn't worked in the past; gotten so I let him write the scripts so he feels important then I don't fill them.

I injured my neck pretty bad a couple years ago in a fall & saw a pain doctor. I called him, had a copy of my latest MRI sent to him & was given a couple non medication alternative treatments NOT COVERED BY MY INSURANCE.

On a given day 24/7 my pain remains about an 8 to 10 on the pain scale. I have a contracture in my left hand from the MS & for the last 4 days the pain has been around a 35 24/7. I don't call my neurologist because 1. he won't do anything & 2. his staff are a bunch of jerks. I called on a Monday afternoon to speak to neuro but he left for the day. I asked to leave a message they said NO I would have to call back the next morning THEN I could leave a message. i NEVER did call back & have not been to see him since. It is hard for me to change doctors because of my complex medical history & other medication needs which this doctor IS meeting.

I attended an MS Conference a couple weeks ago & practitioners from an outpatient rehab spoke. I was very impressed with the program & wanted (not sure I still do) to go. It is really far from my house & in order to go I would need to speak to my Medicaid worker about transportation. I called her about 3 times & at least 4 other people in Medicaid ALWAYS get a voicemail & no one calls me back.

I am just fed up & tired. Locally the treatment I need is not covered by my insurance then I find a place that will take my insurance for 100% payment but I can't go because I can't secure transportation.

Anyone else ever feel like they were beating their head against a brick wall?

I know the last few days I have wanted to put my head thru a brick wall.

[Leesa]

Hi Peg ~ Yes, I've wanted to bang my head many times. Up until recently, my doc and I had been trying EVERYTHING to ease my severe spinal pain that has gone on for 25 years, and nothing worked. Finally after I talk to a doctor online, she suggested a simple combo - Fentanyl patch with Methadone, and it worked!!! I'd had severe back and right leg pain for 25 years following surgery for a herniated disc. Then I had a second surgery and that didn't work either. The sciatica was the worst. It felt like it went to the bone.

Now tho, the pain has switched to the OTHER side. LOL. God sure has a sense of humor. So here we go again. NUTS.

I know you're on Neurontin, but there is another drug that's LIKE Neurontin, but doesn't have the side effects, will help you lose weight and works better. It's Topamax - you might just get better results from it - you could be USED to the Neurontin. Ask your doc to switch you to Topamax and see what happens. This drug saved me - it took away all the burning/hot-poker/stabbing/water running down the leg feeling that I had. I have NONE of that anymore. I'm on 400mg per day and I've been on that dose for about 10 years!!! I haven't had to change the dose at all. Best of luck and God bless. Hugs, Lee

[Maime]

My daughter has had two back surguries and also brain surgery and is still in a lot of pain. I can sympathize with you on this topic. Im hoping I can find some information here that may help her as well as myself.

[Spiney95]

Call the Medicaid ombudsman and report the communication problem. It may get the job done. They (Medicaid) will play these games, hoping to wear you out so you will give up. If they say "no" insist on a hearing. I have been playing these games with those creaps for years and it is only getting worse with all of the cutbacks. Good luck.