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Who oversees your care ?

PostPosted: Thu Feb 11, 2010 7:38 am
by timu
I am looking for a provider to oversee my medical care and wondering what type of provider most of you see?

I should say that I am 6 months post my acute TM. I can walk unassisted but have significant leg/foot/back/butt pain/numbness/spasticity. I have seen neurologists and physical medicine docs since my attack but those I have seen take a "lets wait and see approach" which is beginning to frustrate me. [BTW the doc s I have seen are older and say they have the most TM experience of those in our local medical area] I am now looking for someone who will provide more coordinated, proactive, overching care and rehabilitation regardless of their "experience".

1. Neurologist
2. Physical medicine
3. Pain medicine
4. Internist
5. ?

Have any of you found accupuncture or other alternative treatments helpful?

Thanks
Tim

Re: Who oversees your care ?

PostPosted: Thu Feb 11, 2010 11:15 am
by marieke
Unfortunately TM is a "wait and see" disorder. It takes about 2 years to see what deficits (if any) you will be left with. During this time you may need PT and/or OT or some type of gym program to help you gain strength and balance back.

I have a neurologist and a physiatrist (physical rehab medicine doc). I had PT and OT and a gym program for the first 2 years and then did stuff on my own.

Re: Who oversees your care ?

PostPosted: Thu Feb 11, 2010 2:08 pm
by Sew
I ditto Marieke as well.
Same type of doctor here and same with PT and OT as well.
I'm now post TM 6 1/2 yrs.

Heather in Calgary

Re: Who oversees your care ?

PostPosted: Fri Feb 12, 2010 5:33 am
by Lynne
Right now the only doctors I am seeing are my family doctor, who oversees all my care, and a Spine Rehab specialist who deals with my Baclofen pump. I saw a neurologist for about 4 years post TM. Almost 7 years since onset now.
Lynne

Re: Who oversees your care ?

PostPosted: Mon Feb 15, 2010 10:47 am
by Xuum
I see a Neurologist for my TM and my family doc. My Neurologist is the one who sends me to PT and deals with symptoms related to my TM. I hope that helps.

Xuum

Re: Who oversees your care ?

PostPosted: Tue Feb 16, 2010 7:41 am
by timu
Thank you all for your feed back.
I have an appointment with a new physical medicine Dr. next week. I recognize that recovery can take up to 2 years but I feel like I need a provider who will take a more comprehensive and proactive approach.
I had PT for the first 4 months and progressed very well to the point that my PT felt there little more that he could offer that I could not do on my own. Since then I really feel like I have been "left on my own". I can walk and jog slowly. After a couple of falls this winter with snow and ice I use a cane outside .
When I started experiencing more pain before Christmas my nerologist had me try amytriptyline but this really affected my sleep and after several weeks I had to quit.
The PM Dr. put me on Cymbalta and told me to stop the gabapentin. After skipping 2 doses of gabapentin the pain was so bad I did not want to get out of bed and they said sure you can keep taking the gabapentin. Well now I am taking 3,000mg of gabapentin and 60mg of cymbalta. I have been on this for about a month and dealing with the drowsiness by drinking more tea and actually taking a psuedoephrine after lunch to keep me going at work.
My pain is tolerable but still limits my life considerably I cannot sit on the floor with my 3 and 5 yr olds. I know I am lucky compared to many TM patients but feel like there more I could do. I have a few questions I will post in the appropriate places on the board.
Thanks"
Tim

Re: Who oversees your care ?

PostPosted: Tue Feb 16, 2010 2:44 pm
by Tony
timu, congratulations; you're walking, and you will continue to walk to further recovery. I hope to get there some day; it has been difficult, but I keep trying. Keep us abreast of your progress.

T.J.

Re: Who oversees your care ?

PostPosted: Tue Feb 16, 2010 3:12 pm
by Sew
Tim,
I hope Marieke sees the post and will respond as I don't know the name of the med that some use for the fatigue.
It takes a while for our bodies to adjust to the side effects of the Gabapentin.
Fatigue is also a big part of the TM.
There are meds available by prescription that can be used to help with this.
I was on 3200 mg of Gabapentin at one point but am now down to 2400 mg.
If the side effects of Gabapentin are hard for you then you might possibly be better trying Lyrica. I know that Marieke successfully switched and found the Lyrica better for her.
I know that all of us use a different 'cocktail' of meds depending on our chemical makeup and pain tolerance etc.
The combination of Gaba and Cymbalta is also what some others on her use as well.
Keep posting and try and rest when you can. :ymhug:
Heather in Calgary

Re: Who oversees your care ?

PostPosted: Wed Feb 17, 2010 5:27 am
by Lynne
Sew,
I think you may be talking about Provigil.
Lynne

Re: Who oversees your care ?

PostPosted: Wed Feb 17, 2010 11:07 am
by Sew
Lynne,
Yes that is the medication.
Thanks
Heather in Calgary

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