Regina,I have been exactly where you are now.... what a bummer. I too am going to the "top" neuro in the area, but he no longer has time for me. In fact I came in for an appointment and it wasn't with him anymore my year was up and the diagnosis was TM/MS so now I am with his Nurse Practioner... She's awesome. We get along great and she's open to whatever I want to try. When I mentioned marijuana, tho I can't "quote" her, she said many patients have used it to help with the pain. But it's illegal here in VA and I don't know want to get anyone in trouble getting it for me.. Anyway, I too felt that Neurontin was messing with my memory (although I am 62). I did switch to Lyrica. I had a difficult time with Baclofen as it weakens muscles, so I stopped it. I don't really have much spasticity. I also couldn't agree with you more as to the fatigue. At times it's crushing!! I did try Provigil but thought it made me a little jittery. Did not give it much of a try. I hate taking so many meds! Lyrica, cymbalta, zocor, and a bladder control med. The other problem is when you look "good" people forget that you might not feel "good". It's hard because I force myself out of bed in the morning. (As a catholic I can always find a 9:00 am mass somewhere :) Is it a compliment when your friend says "I don't ever think of you as handicapped". I love going into Wash. DC to the museums.... but it takes everything out of me. I shall stop blabbering on. I am so blessed to have friends that drag me and my walker/cane everywhere ..... even to Italy & Mexico.... Regina, you have a great attitude and that is so important with this "affliction"..... Have a great weekend Trudy
On Sat, May 10, 2008 at 12:59 AM, Regina Rummel <[EMAIL PROTECTED]> wrote: > I saw the neurologist yesterday. She suggested we increase the Neurontin > to 900mg 3 times a day for a week, then increase to 1200mg three times a > week. I asked about Lyrica in spite of my concerns since some of you didn't > do well with it. She said Lyrica was similar to Neurontin, may work > faster, is more expensive. I asked if we can take Neurontin and Lyrica > together. She said yes and that surprised me. Do any of you take both? > And about the spasticity in my hamstrings, she wants me to take 10mg > Bicoflen before I do my exercises. Some of you made negative comments about > Bicoflen, didn't you? I guess you take it as needed. > > I mentioned my memory slipping somewhat. I can order a brain MRI if you > want to she said. But I've had TIAs that probably are the cause. It all > went very fast because I type all the questions and concerns to make sure I > won't forget anything. > > What's wrong with me? Fatigue is a 10 most of the time. Chronic fatigue > is truly a handicap. I can hardly walk. My left leg is acting up big time, > and so is my lower back (T10-T11 lesion). I drag myself with a walker. > Every little thing is a challenge, etc.. Just lifting my left foot is a > challenge. Speaking of foot, Frank was right. Prednisone will bruise you. > I stopped taking it, it's poison. > > I refuse to give up. I cleaned all the floors of my little apartment. I > cooked shrimp and pasta and steamed asparagus for me and my daughter. I > watched and read the news ignoring the blurry right eye, I did this and even > did that.... It's a big challenge to do every little thing. And tomorrow > I'll work all day in the gift shop and check the inventory. Once I smear > the new Channel foundation on my face, eye shadow and gloss on my lips, > perhaps if I look better, I'll feel better. > > But back to the neurologist. She is supposed to be one of the best in > Marin. But why do I feel that she can't wait to go to the next room where > another patient is waiting? I honestly feel that it's because we both know > that there is nothing that can be done for me. That we're both waisting our > time. > > Took a sleeping pill and smoked some pot (medicinal of course) so I can > sleep. But I feel better talking to you who is kind enough to put up with > this babbling. > PS. Jude, I'm thinking about you and hope you feel better and are sleeping > peacefully. >
