I see my neurologist every 3 -4 months, as that is a requirement when receiving Tysabri infusions for MS. Blood work is done every 3 months and Brain MRI every 6 months, all these are requirements for Tysabri. It is a monthly infusion that can possibly cause a deadly brain infection, hence all the follow-up. It is the only MS medication that truly works the best and after doing shots every day for a year with Copaxone I take the chance that all the tests would catch the virus before it did damage.
I do have TM for 4.5 years now, they diagnosed it as being caused by MS. My lesion is at T8-10, I believe. Had to learn to stand, walk, so steps again. Ended up with a cane and walking slower and more unsteady than before TM. I would watch how people walked and especially how they went up and down stairs. My symptoms and pain are pretty much the same as most in this group. It definitely makes a difference who your Neurologist is. Mine diagnosed TM about 5-10 minutes after I first walked through his door. I had 3 days of steroid infusions, starting that day (had them stay late for me), then oral steroids. It was a few weeks after that when I lost control of my leg muscles. This time went into his office in a wheelchair and he put me in hospital for 5 days of intravenous steroids 3x day, then off to Re-hab for few weeks. Finally home, where I never stopped trying to improve and I still concentrate on walking better, etc. If only the pain would stop I could deal with the rest; fatigue, cognitive, unable to do all I did before TM. I am still improving minutely but I can't stop believing and trying to walk normal again and praying that pain reduction would go along with that. For me, my Neurologist is like my PCP; I see him, email him when things change and he gives me all my meds (which is a lot). I have constant very painful nerve pain in both legs, feet being the worst. He is a MS specialist and the office is a MS Center. I also get tested for my optical nerve, cognitive abilities and my gait once a year. I feel blessed to have my doctor. He is available by email anytime, including nights, weekends and of course by phone during the day and an emergency number. He listens to my symptoms, adjusts meds when necessary and marks any differences in my sensations and movements. Seeing my Neurologist on a regular basis also makes me feel secure that someone who is very competent and understanding of my condition is watching over me and knows my history if God forbid something happens again. Wow, didn't realize all this would come out. That is what's great about this group; it's a safe comfortable place to say what you need to because you all understand. It's so nice to have emails from this group again. Make it a great day, Deb From: Barbara H. [mailto:[email protected]] Sent: Thursday, January 17, 2013 11:33 AM To: Robert Pall Cc: [email protected] Subject: Re: [TMIC] neurologist 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
