Deb you have certainly been through hell. I am almost embarrassed to respond to you as I have complaints like so many of us TMers, but nothing compared to what you have been through. I just wanted to say how wonderful that you have such a caring and responsive doctor. I wish more of us could say that. I am so glad that Jude has given the TMICd a new life. I am on FB, but sure missed this group. Hope to see more posts here in the coming days.
Patti in Wisconsin On Thu, Jan 24, 2013 at 5:45 PM, Deb Monteleone <aiki...@optonline.net>wrote: > 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:barbara...@gmail.com] > *Sent:* Thursday, January 17, 2013 11:33 AM > *To:* Robert Pall > *Cc:* tmic-list@eskimo.com > *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 <robthe...@aol.com> 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**** > > ** ** > > ** ** > > ** ** > > ** ** > > ** ** >
