I am up late tonight, with unbelievable pain. A week ago I had my purse stolen from me, and along with it two of my main medications that I use to control the symptoms of my M.S. The two medications were: Clonapin (for muscle spasms in my legs, and insomnia) and long acting Oxycontin. I use to take 8 regular percocets a day, and then other meds to help me not vomit up the percocet.

I decided to take the long acting percocet as a means to lower the over all amount of pain meds I was taking, and to have longer, more effective coverage for my pain. I didn’t want to be on allot of meds, and as a result me and my primary Doctor, discussed my options and came up with the Clonapin/oxycontin combo were the best for me, and I signed a pain management contract. One of the terms was that I would not refill my meds before they were due, so as to monitor the amount I was taking, and to rule out any illegal actions with my drugs (like selling them, or abusing them.)

After loosing my purse to thefts, I called my doctors, and explained the situation. I was also in the middle of a severe flare up due to the increased heat in our area. My doctors told me that “rules were Rules” and I would receive no refill and no pain management of any kind from their office, and if it got bad enough, I would have to go to the E.R.

As A nurse I understand the pain contract, and I understand rules. So I decided to tough it out, and bide my time till my refill (hopefully in four more days.) What I couldn’t understand, either as a nurse, or as a patient…was what my neurologist said to my primary care doctor, who then passed the message on to me.

“As a neurologist, I must tell you that I find your medical practice as a PCP towards my patient (me) to be inappropriate in dealing with her pain issues. It is my findings and opinion as a neurologist that M.S does NOT have pain as one of its symptoms, and thus treating my patient (me) with long term pain meds, is inappropriate and leaves her at a risk for addiction and abuse.

I was stunned! M.S is painless? PAINLESS? So all those nerve pain issues I have are what…fake? All the muscle rigidity, and spasms are what….pain free?

My neurologist in the one year that he has been my Doctor, has never prescribed a single prescription for me, sighting in private notes (that my blessed PCP latter let me see) that in His (my neuro’s) opinion that I am a drug addict, based solely on my inability to get control of my pain without narcotic pain meds from time to time…he also noted that my large amounts of tattoos and piercings were further evidence that I was living a lifestyle congruent with drug abuse?

WTF? I was a drug counselor for five years, at a youth lock down facility….I am a nurse…I am a not a drug addict. I have been evaluated (on my request) for drug or alcohol abuse, and have been found to not be an addict. I don’t even drink!

I am so lost with my health right now…..I can not change doctors or health plans until the first of next year, and must rely on poor Neurologist for my neuro needs, and a sweet PCP who continues to help me research my options, and gives me pain management drugs under a different diagnosis, in order to keep giving them to me.

So MS is painless huh?

I’m just curious; as I know no one else close to me who also has MS…..Does anyone else site pain as one of their complaints?

How does one fight against a doctor who thinks that you are not only an addict based on your appearance, and also believes that MS is a pain free disease?

Sorry to ramble on and regurgitate all my frustration here….but I am in extreme pain, with leg cramps that won’t quit and neuralgia in my arms and face. I refuse to go to the ER, as the last time I did when I went blind in one eye, and had passed out from pain during a heat wave in our area…the ER called my lovely Neurologist and he told them that I was not to be treated, as I was an addict. I had to go see my PCP the next morning, after having not slept, to get steroids to help with the temporary blindness.

Am I way off here….or is this not appropriate care from my Neuro? And not my PCP?

Totally confused and feeling left hung out to dry.

I welcome all comments on this…..
Kat