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


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Old 04-04-2012, 12:27 PM #1
john213 john213 is offline
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Default Undiagnosed - my story so far...

I've had an intentional hand tremor for as long as I can remember, I can recall some kids making fun of it when they saw my hand shake whilst I was writing in class from around about 11years old. I ignored it until I started getting panic attacks at the age of 14. I remember getting my first panic attack - it came out of nowhere. I was dozing on the sofa and was woken up suddenly with my heart racing and my whole body shaking followed by sweating, dry mouth and cognitive confusion. I had two choices: I could have gone to my mother and tell her what was happening to me but instead I ran outside because I felt like I couldn't breathe and needed to get some fresh air urgently. I was so scared. I thought I was having a heart attack or stroke. After walking around outside for about an hour I eventually calmed down and went back home hoping that this strange episode wouldn't happen again.

Oh, how wrong I was. They became a daily occurrence and my life became a living nightmare. But worse was to come. I became severely depressed, withdrawn and isolated. And then the twitches came. It started out as one constant twitch in my left leg that lasted for a few days. They soon spread to the rest of my body progressively getting worse over the next year. But still I didn't tell anyone. My intention tremor also got worse as I became more aware of during anxiety attacks or stressful situations. No one else seemed to notice so I didn't tell anyone and started self-harming as a way to release my emotional pain and frustration at my loss of control.

As I got older the twitches and spasms subsided and in my early twenties I was living a normal happy life. I was doing well at uni and had a girlfriend and a large circle of friends. I occasionally got the odd panic attack and still had a mild intention tremor but I went to see a doctor who gave me anxiety pills and the panic attacks stopped. I also knew that alcohol helped to control my hand tremor and at 25/26 believed that I could cope with it without medication for the rest of my life.

I'm now 31 and over the last few years become increasingly dependent on alcohol. When I'm at rest I don't shake at all but it's now harder and harder to hide the tremor in my hands, legs and head when in movement. Things like typing with both hands, putting a key in a lock, putting toothpaste onto my toothbrush are harder to do than before. I have good/bad days. I try to eat well and get enough sleep but the alcohol use has become chronic. I've tried quitting but have only managed to last a month, at longest, and my life kind of sucks at the moment. I've left work or been sacked from 5 jobs in the last 4 months.

I'm finding it hard to decide what to do now. I know I should see a neurologist but I'm scared. Plus 16 years is a long time to have managed to hide my symptoms from those even closest to me.

I just want some advice from people who know how I feel and how they managed to cope. From my own research I have self-diagnosed ET and BFS. Is it common to have both? I'm worried that it could be something more serious like Parkinson's or MS.

Thanks in advance for any advice you can give.
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Old 04-04-2012, 06:10 PM #2
rbwalton rbwalton is offline
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John213
I am not sure how common it is to have tremor with fasciculation, but I see that they do come up together- and I have them together too. My cause seems to be Neuralgic Amyotrophy- at least that is the only official diagnosis. It causes weakness due to nerve damage, and as a result I have tremor and twitches. I have found that taking a magnesium supplement helps with the twitches and a bit with tremor. But as you already know, with stress even I have tremor. I had tried Propranolol for tremor, and it worked for a while, but not consistently enough to justify the cost. I also had MRI of head and nerve conduction tests. All were negative. If you have a good way to pay for tests, it probably would be a good idea to rule out the bad things. It does not sound like Parkinson's, since that involves a tremor at rest- not movement as in intentional tremor. MS is a pretty involved diagnosis. Do you have any symptoms?


Quote:
Originally Posted by john213 View Post
I've had an intentional hand tremor for as long as I can remember, I can recall some kids making fun of it when they saw my hand shake whilst I was writing in class from around about 11years old. I ignored it until I started getting panic attacks at the age of 14. I remember getting my first panic attack - it came out of nowhere. I was dozing on the sofa and was woken up suddenly with my heart racing and my whole body shaking followed by sweating, dry mouth and cognitive confusion. I had two choices: I could have gone to my mother and tell her what was happening to me but instead I ran outside because I felt like I couldn't breathe and needed to get some fresh air urgently. I was so scared. I thought I was having a heart attack or stroke. After walking around outside for about an hour I eventually calmed down and went back home hoping that this strange episode wouldn't happen again.

Oh, how wrong I was. They became a daily occurrence and my life became a living nightmare. But worse was to come. I became severely depressed, withdrawn and isolated. And then the twitches came. It started out as one constant twitch in my left leg that lasted for a few days. They soon spread to the rest of my body progressively getting worse over the next year. But still I didn't tell anyone. My intention tremor also got worse as I became more aware of during anxiety attacks or stressful situations. No one else seemed to notice so I didn't tell anyone and started self-harming as a way to release my emotional pain and frustration at my loss of control.

As I got older the twitches and spasms subsided and in my early twenties I was living a normal happy life. I was doing well at uni and had a girlfriend and a large circle of friends. I occasionally got the odd panic attack and still had a mild intention tremor but I went to see a doctor who gave me anxiety pills and the panic attacks stopped. I also knew that alcohol helped to control my hand tremor and at 25/26 believed that I could cope with it without medication for the rest of my life.

I'm now 31 and over the last few years become increasingly dependent on alcohol. When I'm at rest I don't shake at all but it's now harder and harder to hide the tremor in my hands, legs and head when in movement. Things like typing with both hands, putting a key in a lock, putting toothpaste onto my toothbrush are harder to do than before. I have good/bad days. I try to eat well and get enough sleep but the alcohol use has become chronic. I've tried quitting but have only managed to last a month, at longest, and my life kind of sucks at the moment. I've left work or been sacked from 5 jobs in the last 4 months.

I'm finding it hard to decide what to do now. I know I should see a neurologist but I'm scared. Plus 16 years is a long time to have managed to hide my symptoms from those even closest to me.

I just want some advice from people who know how I feel and how they managed to cope. From my own research I have self-diagnosed ET and BFS. Is it common to have both? I'm worried that it could be something more serious like Parkinson's or MS.

Thanks in advance for any advice you can give.
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Old 04-08-2012, 12:49 PM #3
john213 john213 is offline
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I live in the UK so where we have the NHS so it won't cost me anything for meds or tests. If I do get a diagnosis I think I might consider DBS at some point in the future if my symptoms get worse. I've been living with my symptoms for so long that I'm hopeful that I don't have anything which is life threatening but now that it is affecting my career and relationships I know I have to find a better way of coping than turning to alcohol for all my answers.

When I was young I never imagined that I would make it past 30. Now I just want the relief of having a diagnosis.
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