Movement Disorders Including essential tremor, dystonia and Restless Leg Syndrome (RLS).


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Old 01-23-2014, 05:45 PM #1
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Default Finally have a diagnosis

I saw the Neurologist on Monday and he said it's ET. I cannot take any of the meds used for this because of other meds I take. There may be another beta blocker, but I already take Norvasc and there is a serious interaction with that and my other meds. I also have a mood disorder and take meds for that and I don't want to feel drugged up which is what it would probably do to me. I'm very sensitive to any medicines and it always effects my fibromyalgia when I take anything new. I'm at my wits end!!! My doctor is sending me for a functional capacity test and hopefully that will help with my appeal to SSI. I know I have to learn to live with this, but I feel I have lost my purpose in life. I can't work. I am barely hanging on financially. I would be ashamed to have anyone in my home because I can't keep up on the cleaning, laundry, dishes, etc. It's like being stuck in purgatory! I can't go back, but I can't move forward either. I'm becoming more and more depressed. I have no money for gas so I can't even go visit my Dad on the other side of town. I used to go to the thrift stores with my friend just to get out and look and walk. The only reason I leave now is if I have an appointment or to get groceries. Being backed into a corner is the worst thing for me because I'm either going to wallow there in my depression or become manic out of fear and lash out at everyone around me. I'm so afraid of completely losing it and ending up in the hospital! That is one of my greatest fears, being somewhere that someone else has control of my every move and my meds too, but there are days that I get so bad lately that I don't take care of myself. Just taking a shower is a drawn out process now and I'm lucky to get in there twice a week. Brushing my teeth is taking me ten or fifteen minutes depending on the tremors. Sometimes I just wish the Lord would take me home.
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Old 04-01-2014, 02:10 PM #2
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Hi gruvingal- I hear ya. I had been having little trmors and numbmess for years, but last july it became constant. i can no longer drive,write, type well, walk, draw, speak clear etc etc.the stairs are getting more and more dangerous as well. the movement disorder neuro tried me on propananol(?) due to my bp. but it did nothign for the trmors and sent me into a emotional spiral.
I make myself go out and take care of my horse daily. but after that I am done. i am pretty sure my dh is tired of "it" as is my dauhter and my mom. and I have no "frinds" to talk with. so I am going to start seing a thrapst.
its frusrating. i went from beng abe to wok 40 plus hrs a wek and waling 3 miles a day and working with horses to not beg able to fold laudry or ty ithout the use of spell check and taking alot of time. pickin up a en and signing my name is brutally embarssig. and to top it off i am not evn postive it is just ET. but iam just so tired of tryng to get an anwer i am grabing that one dx and rolling with it.
workd my entire life in cust serv. now getting thru day is a job.
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Old 04-12-2014, 03:49 AM #3
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Hi there,
I've had ET for 8 years - I take Propranolol, but I have also been looking into what all else ET includes and other ways to treat it. One way is perhaps going gluten free. I'm going to try this for the tremor. Hope things are doing better for you!


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Originally Posted by gruvingal View Post
I saw the Neurologist on Monday and he said it's ET. I cannot take any of the meds used for this because of other meds I take. There may be another beta blocker, but I already take Norvasc and there is a serious interaction with that and my other meds. I also have a mood disorder and take meds for that and I don't want to feel drugged up which is what it would probably do to me. I'm very sensitive to any medicines and it always effects my fibromyalgia when I take anything new. I'm at my wits end!!! My doctor is sending me for a functional capacity test and hopefully that will help with my appeal to SSI. I know I have to learn to live with this, but I feel I have lost my purpose in life. I can't work. I am barely hanging on financially. I would be ashamed to have anyone in my home because I can't keep up on the cleaning, laundry, dishes, etc. It's like being stuck in purgatory! I can't go back, but I can't move forward either. I'm becoming more and more depressed. I have no money for gas so I can't even go visit my Dad on the other side of town. I used to go to the thrift stores with my friend just to get out and look and walk. The only reason I leave now is if I have an appointment or to get groceries. Being backed into a corner is the worst thing for me because I'm either going to wallow there in my depression or become manic out of fear and lash out at everyone around me. I'm so afraid of completely losing it and ending up in the hospital! That is one of my greatest fears, being somewhere that someone else has control of my every move and my meds too, but there are days that I get so bad lately that I don't take care of myself. Just taking a shower is a drawn out process now and I'm lucky to get in there twice a week. Brushing my teeth is taking me ten or fifteen minutes depending on the tremors. Sometimes I just wish the Lord would take me home.
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Old 04-17-2014, 11:30 AM #4
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What is ET if you do not mind me asking?
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Old 04-20-2014, 06:08 PM #5
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What is ET if you do not mind me asking?
Essential Tremor.
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Old 08-02-2014, 03:15 PM #6
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Originally Posted by StillFestive View Post
Essential Tremor.
What causes ET? Has anyone here tried cogentin? and withdrawn from it? I'm wondering as my daughter is being taken off of it abruptly and I'm really scared. My husband has movement at night in his sleep. No diagnosis. Only offering drugs with side effects. Two problems...daughter's caused by psych drugs. Be well.
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Old 08-02-2014, 07:29 PM #7
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Essential Tremors or action tremors. Mine is inherited from me grandmother.
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Old 08-02-2014, 09:34 PM #8
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Hi gruvingal,

I am glad you finally have a diagnosis. Sometimes that alone is a help. There is no way of treating something if you don't know what it is that needs treatment. Just treating symptoms is often used but not always the best course of action.

I think about undiagnosed illness and only treating symptoms like having a lawn with weeds. You spray the yard with weed killer but the weeds persist. Unless you "identify" the weeds and use the "appropriate" weed killer, you are wasting your money.

My point is, getting a diagnosis is a big step and a big help in finding the proper course of treatment. I am sorry to learn that the appropriate treatment is contradictory to the medications you take for other conditions. What a bad situation for you.

I did not know what ET was until I read some of the posts on your tread. I do hope the functional capacity test will help you in getting assistance.

While I do not have ET, I can relate to the rest of your post.

Quote:
but I feel I have lost my purpose in life. I can't work. I am barely hanging on financially. I would be ashamed to have anyone in my home because I can't keep up on the cleaning, laundry, dishes, etc. I'm becoming more and more depressed. I have no money The only reason I leave now is if I have an appointment or to get groceries. I'm either going to wallow there in my depression or I'm so afraid of completely losing it but there are days that I get so bad lately that I don't take care of myself. Just taking a shower is a drawn out process now and I'm lucky to get in there twice a week.
Oh, how so many of us can relate to your statements of how your life had been impacted by illness. Many of your statements are the exact same words many of us would say.

I won't even let family members in my home any more since I can no longer keep up with the everyday housekeeping chores. I almost never leave my home except for doctor appts. and the once a month grocery trip. More often is more than I can handle.

I am so sorry you are in this dilemma. I hope you can find some way to treat your multiple conditions that will not interfere with the meds for another condition.

Wishing you better days.

Reading posts by members on NT help me with the depression that comes with chronic illness and pain. When I read a post like yours and many others, I realize how much more could be wrong with me, how much I am NOT dealing with, how much better I am than so many others here, and I am so happy that my life is not so bad when compared to so many here. It snaps me right out of my depression and makes me so thankful for the life I now live. That is not to say that I don't still have many times when I mourn the loss of the life I once had verses the one I am learning to live with now, it just puts my current life into better perspective.

Let us help and be a shoulder for you. Even if some of us are not afflicted with the same illnesses you have, there are still many things we can relate to just by having the same frustrations. It now takes me a week to do what I previously did in just a few minutes. Many things are just not possible at all.

I wish I had some wisdom to impart that would help you in your situation but all I can offer is good wishes for you to have better days. I am glad that you finally have a diagnosis. Knowing what is behind your symptoms is important in many ways.
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