Not sure where to start.... when things aren't working(?)

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Permalink Reply by Mo on June 25, 2009 at 11:21pm

i had a threshold when i took neurontin for tremors. 300 mgs 3x per day = 900 mgs per day. if i went over that i shook from head to toe like nobody's business! it could be your neurontin levels are to high. i would see if my dose works for u. i have found most docs only use an across the board guideline for prescribing, it is up to us to tweak that recommendation. because remember.... what works for one does not for another.

mo

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Permalink Reply by Lene on June 25, 2009 at 11:39pm

HI Sue,

So sorry to read of your frustrations and I certainly understand. Not really remembering when you were DX with dystonia so its hard for me to say. I take synthroid also 100mg.
I was never in the last 7 yrs told my tremor was due to that medication. In fact my neurologist said that 30% of dystonia patients get tremor. (I have tremor in my head, arms and hands..(Now this is not every day.) Somedays I do not tremor but slightly. I know its a mystery to all of us including many Doctors.
My doctor changed my neurontin to 400mg in morning and 800mg at night. He said that paticular change would help my tremor and it has. So I am doubting its the neuronton at least from my perspective.

Adaptive technology sounds like something you might speak into and the computer types. YES???? That sounds interesting. My phone is like that and its weird how it picks up what I am saying and calls the correct person.

Is your neurologist a movement specialist? Lots of neurologist do not or have not studied dystonia while in school. I think it's studied now. I first went to a neurologist and she was cluess..then I found out through all these resources we have to go to on the internet a movement specialist. This lady I go to is wonderful and gives me botox with the aide of a emg machine. She really does not need it...when she pokes around she can find the spots real fast.

Please if you are looking for someone else, contact the Dystonia Medical Research Foundation here in Chicago. They will print out for you a list of movement specialist in your area...
Hang in there sweetie....we all understand your frustration. Lene

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Permalink Reply by Imove on June 26, 2009 at 6:35am

Have you tried using www.Dystonia-ResearchFoundation.org (then go to the Support tab) which has listings of neuromuscular specialists listed by state? I found that to be very helpful. I, like many others, have been on the same merry-go-round as you as far as doubtful doctors, misdiagnosis, etc. i know you are frustrated - I sure have been myself. If there is any way you could video your spasms & twisting, that would be very helpful to take to the next neurologist, and if I were you I would try very hard to go to a neuromuscular specialist who specializes in dystonia. Take heart that you've at least gotten a correct diagnosis, which is a start in the right direction - some of us haven't even gotten that far. Who prescribed the Neurontin - your family dr or the neurologist?
~Connie~

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Permalink Reply by beka on June 26, 2009 at 3:25pm

Hi Sue -
Yes, too much synthroid can cause tremors but generally they are of fine nature..have you had recent thyroid function tests ?
What form of dystonia has been diagnosed ? Name given ?
Seems that you are not getting much help from your current neurologist. I would google the words movement disorder specialist and the city you live in to find and gain a second opinion.

Do let us know how you are...
beka

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Permalink Reply by suej on June 26, 2009 at 9:27pm

Hi to all who replied,
I wants to thank you all for your suggestions and ideas. To answer some of the questions first of all the tremors in my hands and legs began in 2003 at that time we lived in a small community with few drs available. An example of how small it was is the closest major medical facility was 3 hrs away! Anyway in 1998 I was diagnosed w/ hypothyroidism and truthfully was seen by a nurse practitioner not at dr. At one point I know I was receiving too much synthroid because she mentioned to me my number (level) in the hyperthyroid range but she didn't change the dosage even when I mentioned I was having tremors . That wasn't addressed. So I know many of you are thinking why didn't I change medical practitioners? The answer is there really wasn't anyone! Anyway when my husband and I moved to Va. The family physician reduced the synthroid to acceptable levels but it was to late the tremors continued. Thus began my quest to find out what was going on because I can barely write, I have muscle spasms in my legs, hands ,arms . In May I went to see my current nuerologist he diagnosed me with multi-focal dystonia he said based on my "unusual posturing when I do fine motor activities like writing(he watched me try to write) and how I walk ( whatever that means maybe because I tend to walk on the inside of my feet and my toes curl?????), told me to look it up on line (what it was) ,talked to me about Botox which at the time I declined because I wanted to do more research gave me a prescription for nuerotin and told me to see him in ~ month. In June I explained to him about the spasms in my shoulders and legs I guess he wasn't concerned because all he did was upped my meds and told me to call him if I had any other questions concerns and that leads to my post you all read.
So now you all know my life history or at least the last 10 years or so. Thank to Imove for your suggestion I found two drs in the area one linked up to a college and another nuerologist. I think I will call them on Monday. Beka, I'm not sure what more I should do I have MRI's of both my brain and back/cspine which I showed to my current nuerologist .I can bring those any other suggestions?

Thanks to all for your help sorry about the long reply,

Sue

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