I think it depends on one's needs. I've had TM for 17 years and haven't seen a neurologist in about 14 years. I got to an acceptable plateau (can walk and pretty well function as a homemaker and volunteer, have some issues with fatigue, balance, and muscle spasms. I don't think I could hold down a job for various reasons, but I've been able to raise my children, keep my home, and help out in various areas at church and my kids' schools). I am not on any TM-related medications, so when we moved to another state, I didn't seek out a new neuro. It helped that my PCP was knowledgeable about TM and willing to refer me to anyone I wanted to see -- it was through him I was referred to a urologist for problems in that realm. If I had problems that only a neuro could help with or was on certain medications that it would be best for him to monitor, I'd see one, and I'd encourage anyone with any of those needs to keep seeing one, but otherwise there is no need to see him every year just to hear that everything is the same, which is about where we were when I last saw him. Of course, if new problems or questions crop up, I wouldn't hesitate to seek one out.
Barbara H. http://barbarah.wordpress.com On Thu, Jan 17, 2013 at 11:21 AM, Robert Pall <[email protected]> wrote: > I disagree with all of you who are saying that you have either stopped > going to a neurologist or see one very infrequently. I saw Dr Kerr at John > Hopkins for the first 10 years after coming down with TM. I go to my > neurologist at least once per year to insure that my meds are the best > they can be. New Medications and procedures happen all of the time....by > seeing a neuro I assure myself that I am getting the best treatment > possible. Just last week I changed to a new neurologist, Douglas Holland > in West Long Branch NJ. Not only did he prescribe medical marijuana for me > he also set up a test to inject baclofin directly into my spine and see > over a period of 4 hours if it makes a noticeable improvement. If it does > we may consider the baclofin pump....if it does not we will explore other > options to help me better cope with my pain and discomfort. > I head up the New Jersey TM support group. The main benefit of a > support group is comparing doctors and medicines that others are seeing > or taking and perhaps get some new ideas regarding treatment. At our last > 2 meetings we had as a guest speaker the head of physical therapy who > gave us many ideas of simple things we could do in our own homes to > exercise as well as hospital treatments that could prove beneficial. > I have had TM for over 15 years....and I have fought this condition > every single day. I cannot walk very well....but I have learned that I can > swim pretty good. I now swim one mile a day......and even if this is doing > nothing for my TM it is at least giving me a great cardio workout. > Finally I purchased a Golden Retriever......this 60lb dog forces me to walk > at lease 1 hour every day. > Start living or start dying! > > All the best! > Rob in NJ > > > > >
