Quote:
Originally Posted by doxiemama
Hi Tom,
I don't post often, I am what is called a "lurker". I accidentally came across this forum and although I have MS and orginally checked out those forums, I have found the "SOS" to be my cyberfamily. I have not been officially diagnosed as having secondary progressive ms. I know that having it "officially" named in my records may affect how my insurance may cover my medications. Although I have significant weakness in my left leg and recently spasticity and have used a cane for years and a scoother for long distances, one of my main problems has been severe pain. I am on 900mg of lyrica, 120mg of cymbalta, 50mg of elavil a day. The pain never really makes it go away, but I can function. I won't go in detail about what function is in my world. I can do that in a another post if you want me to. I also take oxycodone for breakthrough pain which for me is pain so bad I can't do anything. I do smoke marijuana. It does help. I went to a pain management clinic. That's who prescribed the oxycodone. I use to take vicodin, but that didn't help. I have heard nucynta is good for pain. Haven't tried it yet. Would have to go back to the pain clinic-another doctor. The pain clinic also would want me to go monthly to monitor my meds. So far I haven't been back since I got a 90 day script for the oxycodone. They also suggested a neurostimulator which is implanted in your spine. It lasts for 5 years and then you have to get a new battery implanted. They can do a trial to see if it would work. Just thought I'd put my two cents worth in. I have been lurking and following your posts.
I'm glad you joined our family.
Doxie
|
Hello, Doxie: Thanks so much for your contribution. I hope you will step up and make more of them; you obviously have a lot to offer.
I'm taking note of the meds you mentioned. The Lyrica (2 pills, 75 mg each per day) makes me feel soooo tired. I called my neurologist's office this a.m., asked if I could cut back to 1 pill. All this pain killer stuff is so powerful, it has disadvantages. Nucynta? Never heard of it. Oxycodone either (which shows my lack of knowledge about painkillers), or even cymbalta or even elavil. I'll mention them to my doctor -- definitely. If I have to, I'll stay with the Lyrica, but only if I have to. Right now, I feel EXHAUSTED. This business of making the bed and stopping to huff and puff, well, it's not for me. Something's serously wrong, and it's getting worse.
O.K., a few minutes ago I just got an appointment with the rare disease specialist on December 28. Busy guy -- apparently one of the best in the world. The neurologist is still waiting for the results of the anti-MAG blood test to come in. The theory that anti-bodies build up for one purpose (defense against a disease) can turn around and attack neuro fibers, intrigues me. I have a lot of allergies to plants and weeds; it is an OVER production of hystamines by the body, it turns out, that causes the problem. And hystamines are a defense mechanism.
In all this, there's only one diagnostic test I won't take, probably under any circumstances: a spinal tap. When I had polio, they gave me one and I still remember the excruciating pain. Apparently when it's done right, you don't feel a thing. Such was not my case -- let me assure you.
Lyrica, they say, creates suicidal thoughts; I don't think it does in me; such thoughts were there long before Lyrica came along. However, Lyrica may reinforce or maintain them. I'm not sure. It's simply that every step now is a burden, heavy, heavy, heavy. I don't have a cane or a walker -- but they're not far away.
One thing, maybe I don't understand: you say you don't yet have an official dx. If you got one, would the insurance pay more or less for your treatment?
900 mg of Lyrica!! How do you stand it? I hope you'll continue with the pain clinic. I don't see how it can hurt, and it might just help.
Bestest to you, Doxie. And again, I hope you will post more often. You have so much to say!
Tom