Hi, Heather. It sounds like you had a pretty good visit too. I am going to ask my new neuro about Lyrica, too. I have recurrent TM and after the 3rd episode I haven't seen much improvement.
I do take calcium every day along with a multi-vitamin with minerals. I take my baclofen doses 12-13 hours apart, the dose in the evening is double the a.m. I do not take a midday dose. I wanted to take the baclofen at bedtime, but I forget it too often and then I'm wakeful during the night, having a hard time staying asleep. So I take it a little while after dinner with all my other pills, and try to go to bed about 2 hours after taking it. I can usually get 5 or 6 hrs of sleep that way. Deep sleep is one of the things I miss the most!
I would not believe him about
the improvement, though. 6 mos to 1 year may be the common, but we are not amoung that group. My dr.s told me that it can happen as far as 5 years out, and as long as you are working your muscles and exercising, you shouldn't give up...and I know you won't!
Have a great weekend, DebC in Mi.
--- On Fri 11/04, Heather & Pieter < [EMAIL PROTECTED] > wrote:
From: Heather & Pieter [mailto: [EMAIL PROTECTED]
To: [email protected]
Date: Fri, 04 Nov 2005 15:53:49 -0700
Subject: Fw: [TMIC] Spill
----- Original Message -----
From: Heather & Pieter To: [EMAIL PROTECTED] ; [EMAIL PROTECTED] ; [email protected] Sent: Friday, November 04, 2005 11:54 AM Subject: Re: [TMIC] Spill Hi Deb I was at the physiatrist on Tuesday. I have had TM since Sept 6/03. I am one of the walking wounded. At my visit I asked him a lot of questions. About Lyrica - he said that there are too many side effects and that
he would like me to stay with the Gabapentin. He said that Lyrica goes by a different name here in Canada. There is not a generic brand and that it would not be covered by our Medical plan. Unless I had private insurance it is very expensive. About Calcium - I asked if I should still be taking Calcium and the Vitamin D. He said yes, that I should still be on 1,000 mg of Calcium per day and I already knew that the Vitamin D helped with the absorption of the Calcium. He did ask though if I had had a bone density test. I told him never. So he is going to ask that my GP do one of those once a year. Since our bodies lose Calcium and strength very quickly and especially when I was in hospital the 2 months and in recovery mode for much longer it is a good idea to do this. At least that is how I perceived it. I wonder if that is why some break bones so often when having TM. I have not broken any bones bu!
t
I have fallen several times. I seem to trip over the littlest things or non-things (I wonder who puts those little pieces of fluff in our way on the floor :>) ) I asked about how I would go about cutting back on pain meds if I can tolerate it. I would like to try and limit the fogginess and forgetfulness that seems to be part of the medications. He said that I should try and stretch the time between doses if I find that I can tolerate it rather than cut down on the amount of Gabapentin each time. He said that some of his patients go 4 hours, some 5 hours and some longer. Personally I take 600 mg every 5 hours while I am awake and am trying out taking it 6 hours to start now. As for the Baclofen he told me to cut that back very very slowly. I now take 20 mg every 5 hours as well. Since my spasms are mostly in the morning when I wake and at night when my body is tired after the day he suggested
reducing by 10 mg at my mid-day dosage. See how that goes for a while. Should I expect more improvement in my symptoms? He indicated that where I am now at just over the 2 year mark is possibly where I will be from now on. There could be 'some' improvement however the most and fastest improvement is usually shown in the first 6 months to a year. In my case this is what I have already seen. Will I have anymore MRI's? He said no. The scarring is there as shown on the last MRI done in Jan of this year 2005. There had been no change from the previous one to that and there have been no new symptoms. It would not be necessary. Should I be taking Vitamin B12 shots? He looked at my file. He indicated that 'normal' was around 100 (at least that is what I think he
said) - that fogginess again. Mine was at 500 so I was well above 'normal' and need not worry about those shots. How often should I be coming back for appointments? Since I am still regulating my medications he would like to see me again in 6 months. I can always call and make an appointment to see him sooner if I have any further questions or concerns. Thought someone out there may be interested in hearing about my visit. Heather in Calgary
----- Original Message ----- From: Deb Casey To: [EMAIL PROTECTED] ; [email protected] Sent: Friday, November 04, 2005 9:03 AM Subject: RE: [TMIC] Spill
You faired much better than I. In fact I had just got done telling my husband not to worry so much, that there wasn't even enough room in our bathroom for me to fall, and of course you all know the story, I not only fell, but I fractured my ankle bones, resulting in surgery and plates, screws and pins-since TM I have fractured or broken 6 bones!
I am very careful now, and they don't know why my bones are so easily snapped, especially since they say I haven't been on the pred long enough for that to have an effect.
Glad you got off with only a bruised ego, but on the flip side you have another humorous TM story to share!
Thanks for the grins,
DebC in Mi.
--- On Thu 11/03, Cody Kidwell < [EMAIL PROTECTED] > wrote:
From: Cody Kidwell [mailto: [EMAIL PROTECTED]
To: [email protected]
Date: Thu, 3 Nov 2005 21:07:51 -0600
Subject: [TMIC] Spill
I fell out of the wheel chair again. I am beginning to think I don't belong in one of these things.Ha! Ha! This time I was in the bathroom getting ready to transfer to the shower chair. I was not transferring. I was just sitting in my chair and had grabbed the remote to turn on the TV to watch while taking a shower. It happened so quit I am not real sure what happened other than I landed in the floor. I think I had a spasm in both legs and maybe my back or abdomen. I think my legs and body just had a spasm and my legs straightened forward causing me to slide forward and the wheelchair to tip forward causing me to slide out and down to the floor. I landed on my bottom with my legs crossed in front of me. No body damage or bruises or anything. Just my pride was hurt. My son came over and scooped me up and on to the bed. We checked the wheelchair and nothing had came loose or anything wrong that we could find. I guess I just need to be more
careful.......Cody in Austin
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