[TMIC] flu
Have had TM for ten years and have had the flu shot each year with no problem. This is the only site that I read.
[TMIC] Facebook
How do you get on Facebook for this group?
Re: [TMIC] age got tm
GUESS YOU GET THE TROPY FOR AGE. ann in Virginia name robert diehl age now 77 live in doylestown,pa i was 72 and got transverse meylitis and guillem bryee symdrum...that was april 1 2004 spent the whole month of april in the hospital
Re: [TMIC] Question
Have been using tramadol for years. It does not take away the pain but does dull it some. Have no trouble getting tramadol in the states. Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sat, Nov 28, 2009 7:04 pm Subject: [TMIC] Question Someone sent me this email. Does it make sense to anyone? Transverse myelitis ... Transverse myelitis Have you considered the following: TM is usually caused by Antiphospholipid Syndrome /Hughes Syndrome (also known as APLS APS). If it is you may find relief in the other treatments for it. Second, have you gone to a Pain Management doctor? For years I was never informed of such but for Neurologists. Not all Neuros are also Pain Management. They will run diagnostics and properly treat the pain. Otherwise, you can order overseas through a trusted pharmacy I've used for years at http://www.yasminpharmacy.com/ and look for Tramadol. Its not considered a controlled substance and its legal. If the site is down, keep trying. The bandwidth gets used up easily and it is shopping season. Its all legal. :) I hope something here helps. I do have APLS so I dread the potential. I will pray for you. :o) Cheers! I'm mainly wondering about the APLS/APS as I've never heard of them, and the Tramadol. Make sense to anyone? Kevin
[TMIC] (tmic) BM'ers Club.
Don't forget I am treasurer.? Any amount of dues would be appreciated.
[TMIC] BMer's Club and new medication
I note no one has said anything about being treasurer?? I will be glad to serve as same.? Please send dues to me. Rob I tried Cymbalta and the only effect it had on me was I could not pee.? Decided I sitll had to put up with the banding. Ann in Virginia
Re: [TMIC] question
Have a pain all the time on my right side. When I become constipated the pain becomes much worse and goes all the way up to my shoulder Ann in Virginia -Original Message- From: Kevin Wolfthal wolft...@optonline.net To: tmic-list@eskimo.com Sent: Sun, Aug 9, 2009 5:16 pm Subject: [TMIC] question Has anyone ever noticed that constipation, or not moving? your bowels regularly for any reason, can make other symptoms? worse, such as spasms?? ? Kevin? ?
[TMIC] T.e.n.s. Unit
Do not often post but have certainly learned from the comments.? Have used the T,E.N. S unit for about seven years and have certainly found it helpful for pain.? It does not relieve the pain but certainly does help it. Ann in Virginia
[TMIC] Help
I am getting the digest but am not getting the individual postings. Up until this past week I have been getting the posting for all of you. Any suggestions? Ann in Virginia **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
[TMIC] subscribe
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[TMIC] check
Am I still on list? **Get the Moviefone Toolbar. Showtimes, theaters, movie news more!(http://pr.atwola.com/promoclk/10075x1212774565x1200812037/aol?redir=htt p://toolbar.aol.com/moviefone/download.html?ncid=emlcntusdown0001)
[TMIC] subscribe
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[TMIC] Tens Unit
I have used the tens unit since Tm invited itself into my body. Have found it to be very helpful. Am not aware of pain as much and it does help with my legs. Give it a try. Ann in Virginia **Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr000520)
[TMIC] legs
Just because my legs are attached to me does not mean that I recognize them as part of my body. In fact I have disowned them. Since they are now disowned my life has become much easier. I get up in the morning and do not have to think which way my legs are going . I just let them go the way they want and then I go the way I want. Ann in Virginia **Get fantasy football with free live scoring. Sign up for FanHouse Fantasy Football today. (http://www.fanhouse.com/fantasyaffair?ncid=aolspr000520)
[TMIC] 5 year plan
Gunny Many thanks for becoming a part of my five year plan. Sounds as if I had better get my fat ? to the pool. Guess there is no quick fix. Trudy Shame you don't live at Virginia Beach. I was referring to the Transverse Myelitis newsletter of spring 2007. and thanks for the good wishes in bridge. By the way I just had my fourth grandchild. A little boy born on October 4 weighing in at 4 lbs. 4 oz. Mother and baby are doing fine and Jack is supposed to come home today. Ann in Virginia ** See what's new at http://www.aol.com
[TMIC] where is the chatter
Are we all cured or are we just not chattering due to the cold? ** See what's new at http://www.aol.com
[TMIC] Question
Has everybody gone to find Frank? Ann in Virginia ** See what's new at http://www.aol.com
[TMIC] (no subject)
** See what's new at http://www.aol.com
[TMIC] e-mail check
** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
[TMIC] Question for The Mob
Have been too busy helping husband who had stroke to be in contact with you.. He is much better so now have a question for The MobDon't you all like your new name. Anyway my massage therapist allowed as to how the muscles in my legs were getting hard. I have noticed that my legs are bothering me more. Have any of you had this problem and if so what did you do? Many thanks for any input. Ann in Virginia (where it is still hot) ** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour
[TMIC] Feet
Don't have hot or cold feet. Have feet that feel like walking on marbles with duck tape wrapped around them. Ann in sunny Virginia ** See what's free at http://www.aol.com.
[TMIC] husband with stroke
Hey Gang, My husband recently had a stroke and he is now having spasms in his legs. He has been put on bacolofin but I was wondering if any of you had any hints of how to make one more comfortable. Thanks for any input you can give me. Ann in Virginia ** See what's free at http://www.aol.com.
[TMIC] (no subject)
Or, should I simply be more thankful for getting any and all of the email that I do get and Thank the Lord that there are people who think of me at all? Of the two choices I choose the one above. Ann in Virginia ** See what's free at http://www.aol.com.
[TMIC] Tens Unit etc.
Trudy, Just read your note to Jude and had to reply. First of all I live in Roanoke which is in the western part of the state and have a few years on you. I am 69 and have had TM for four years. My husband is a retired physician and many years before I developed TM he described neurology and a place of last resort for a patient. Another friend of mine said that I had something that no physician wanted to see you for since it could not be cured. Now do you feel better?. I tried baclophen and it also made me weave around like a drunk. I then tried Lyrica with the same result so am just taking neurontin.. My experience has been that a pain doctor listens to me better than anyone else. I read the posts from everyone on the list and the I go to her and say what about this. She is willing to try various suggestions and immediately discontinue them if they don't work. Am not a big believer in medicine and take as little of the pain medication(tramadol )as possible. The tens unit is an electrical nerve stimulator. I do find that this helps and it is covered by medicare. Ask your new neurologist about it Am not sure it would help everyone. I have pain around my middle and it certainly does help me there. Good luck with your new doctor. Ann in Roanoke Virginia
[TMIC] Pain
Welcome back Trudy. I have had Tm for five years. I started off with a little numbness and have progressively gotten worse. Right now I am on 2400 of neurontin. Am not aware that it helps but when I forget to take it I realize that it does help with the burning. I also take Tramadol (50 MG). This helps somewhat with the pain but certainly does not do away with it. My description is it takes the edge off.I tried Lyrica but I was weaving all the time and it made the muscles in my legs weaker. In reading the posts most of us have tried the things that I have mentioned. I do find that a heating pad helps a lot and I use a tens unit which I have found to be very helpful. Ann in Virginia
[TMIC] tm
I notice that every thing refers to acute TM. Has anybody in the group had TM that has come on gradually. Everyone should read the link that Frank sent about GP's. There I guess is nothing we can do about this but we certainly should be informed. At a hospital here in Virginia who employs physicians unless they see patients in an allotted time the physician is asked to leave. Am afraid that this is becoming the norm and is certainly a poor way to practice good medicine. Ann in Virginia
Re: [TMIC] subscribe
You can correspond with all of the group by just writing using the original address that you used that I replied to. In case you do not still have it, the address is listed above along with yours. Ann in Virginia
[TMIC] mail
Have been gone for a week and have no mail from the group. Are we all on vacation or do I have a problem at my end? Ann in Virginia
Re: [TMIC] HMO's
The fun part you are having right now. Tomorrow will be a breeze. ann in Virginia
Re: [TMIC] Question re: Lyrica
Just got back in town and have been reading the postings. Am glad I found someone else as strange as I am. I too could not use the Lyrica. Really did something to my muscles in my legs. Ann in Virginia
[TMIC] You may get worse
Frank, I was having a pretty decent weekend until I read your note to Sally. Have not heard anyone else mentioning the fact that they were getting worse. Like you, I had no pain originally and when they kept asking me about pain I did not understand what they were talking about. Now I do. Was hoping that this stuff would level off. I have had TM since 2003. Note that you have had it longer than I. Do you ever think I will level off? Say yes, even if you don't believe it and are you still on the Lyrica? If so how is it doing? Ann in Virginia
Re: [TMIC] More questions
Dear Nima, I have had Tm for almost four years. I too have been getting considerably worse in my pain, walking etc. I have been on Bacloen, Tizanidine and Lyrica all at separate times. I found all of these medicines to make my muscles in my legs much weaker. Actually I was walking like a drunk all of the time. As soon as I came off of each medication (within a week) the muscles in my legs were much better and I certainly was walking better. In reading the posts for other people, I have not read where anyone's symptoms got worse and it seems that most people have had not trouble with any of the above medicines. I am taking neurotin and that does not bother me but am not sure if it helps. Ann in Virginia
[TMIC] Kate's question
Kate.. Was hoping someone would reply to you since I have the same questions but no answers. It does make sense that the more you use your legs the better off you would be. Hopefully someone who knows the answers to your questions will reply. Is there any documentation on TM - specifically on the pain aspect and physiotherapy - that I could print out to give them? (Also; is this a valid point; in that the muscle wastage will prevent me from walking if I don't overcome the pain and keep going before it gets too severe? Apparently I have quite a bit of muscle wastage on my legs already, and whilst doing all the exercises helps a bit; the physio thinks I need to keep trying to walk, in spite of the pain, if possible). I will print out the info files that are on this site, but if there is anything specifically relating to the rehabilitation and physiotherapy aspects, that would be very helpful! I don't think the medical profession here (esp. those in public health system), really knows what to do with this situation; and each different (public health) physiotherapist that gets assigned to me seems to have totally different ideas, method and approach. All have said that they've never treated anyone with TM before, and don't
Re: [TMIC] loss of bowel control
When on cruise I go to dance floor with my walker and then get on floor pretending I am dancing. Porbably look like a fool but have a good time. Ann in Virginia
Re: [TMIC] Re: tmic-digest Digest V2006 #15
How the heck do you get to the digests? thanks Dumb Ann in Virginia
[TMIC] Many Thanks
Ok gang I thing I have had all my questions answered until my computer dies again. Many thnks. I still think sour apple martinis are the best and one question that I did have that I did not ask. HOW THE HECK DO YOU GET RID OF THIS STUFF and I am not speaking of the martinis. Ann in windy Virginia
[TMIC] Lyrica
I tried Lyrica for about ten days. At the end of that time my walking was such that I did not know which way my legs would take me. Lyrica had the same effect on me that Baclofin (sp) did. I took the Lyrica in November. I am now walking better but my legs still feel like wooden solders and they did not feel like this prior to the Lyrica. My insurance company would pay for it so am certainly sorry it did not help me. Ann in Virginia
Re: [TMIC] Lyrica
Have you tried the support knee hi's? I just happend to have a pair that I purchased years ago and put them on today. Really seems to help. I do not mean the prescription kind but the kind that you can buy anywhere. Ann in Virginia
[TMIC] Questions about medication
My computer has not been feeling well so have been away for a while. Hope everyone had a happy new year. Prior to computer going down I heard from someone in Uk that was taking Lyrica. I tried this and it made my muscles weak and legs stiff. He also said his legs were stiff but he was contenting taking the Lyrica because it was helping his back. I wonder if he is still having the side effects or if they have gone away. If anybody else has any comments about Lyrica, let me know. I am now taking Neurontin and I just got refill and accidentally did not read directions. Ended up taking l600mg every eight hours rather than 800me. Anyway I feel much better and was wondering if anyone knew how much of this stuff you can take. Of course, this always happens on Friday when I cannot get doctor. Many thanks for any comments. Ann in Virginia
Re: [TMIC] TMIC Lyrica
I also took the Lyrica and could not tolerate it. Definitely caused muscle weakness in legs. Did not have any trouble getting approval for it from Anthem here in Virginia. Physician had to write and as soon as he did drug was approved. Just wish I could take it. Would certainly be nice to have something that would help.
