Barbara: Ashlee is in the same position, basically, that you are. She can walk, with the aid of forearm crutches (for longer distances), or with the help of walls (when she is in our home). She rarely has muscle spasms, and she rarely has fatigue (could be b/c she is only 19). She has had TM since Feb 1 of 2005. She is starting back to college next Wednesday for the Spring Semester for her Business Associates degree. She packed 4 classes into 2 days a week for the Fall Semester and maintained a 4.0 GPA. She is going to do the same for the Spring semester (Tuesdays and Thursdays) with the addition of a few hours on Friday mornings for the math class. She has just started working here, in the same insurance agency that I work in, and is going through boxes of old paperwork and is scanning them into a computer program. She is going to work on Mondays and Wednesdays. The entire job consists of her sitting at a desk and using a computer so she is doing really well with it. She worked from 9 until 5:15 last evening with an hour for lunch and she was still up and on Facebook at 11:45 last evening. She was up and watching TV this morning when I left for work. The local college that she goes to (HACC) has even emailed her and asked her to tutor math for some students but as of right now, she really doesn't have the time between classes starting and working. She doesn't drive so she comes to work with me and goes home with me. The Dr will not sign off for her to even get her permit, and so far she is ok with that. She has a boyfriend that takes her places or her father, brother or I take her. She really isn't on any TM medicines either. She takes 15mg of Oxybutnin a day and then everything else she takes are either vitamins or fiber therapy pills (all over the counter). Obviously, if she started to have issues with new numbness, etc, we would seek a new neuro out but it has not come to that.
Tracey L. Black Certified Insurance Service Representative Hockley & O'Donnell Insurance Agency PO Box 3039, 132 Buford Avenue Gettysburg, PA 17325 Phone: 717-334-6741, x 29 Fax: 717-334-3414 Office hours: 8:00 a.m. - 5:00 p.m. My hours: 9:00 a.m. - 5:00 p.m. [http://www.scic.com/files/CISRlogo_LoRes.jpg] [HODonFB] <http://on.fb.me/hnofb> P Please consider the environment before printing Insurance coverage cannot be bound or altered without confirmation from a licensed agent. If you do not hear from us within 1 business day, please re-contact us in case your information has not be retained. This message contains confidential information for use only by its intended recipients and may contain information that is proprietary, privileged, and protected under the law (including Gramm-Leach-Bliley and HIPAA/HITECH). If you are not the named addressee, you are hereby notified that any use of, distribution of, copying, or reliance upon the contents of this e-mail is strictly prohibited and may result in criminal or civil penalties. Please notify the sender immediately by e-mail if you have received this by mistake and delete this e-mail from your system. Thank you. 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<mailto: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
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