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sorka

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PALS
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Merced
I'm really freaking out right now. I had no idea what ALS was before yesterday. Back in March, I noticed that my right hand got tired fairly quickly while driving wood screws into a post. I had to switch to my left hand which never did tire out. Also, at some point my right foot started catching on things occasionally. Sometimes a stair, sometimes a doorway, and even a grout line in the tile every now and then. Thought nothing of it except maybe just aging(Oh, I'm a 37 year old white male. Occupration: software engineer for 17 years). Then about a month ago, my right hand and leg started feeling ever so slightly week with mild almost barely perceptible cramping. This got slightly worse until about two weeks ago I've had noticiable weakness in both the right hand (really the forearm) and right leg theigh and several days ago calf. In the last week, it's been more difficult to push the mouse around and I'm starting to miss keys with just the right hand. Recently when lying in bed at night, I've experienced mild heat and cold sensations in the right limbs and and the sensation that I need to stretch them. My gate is not yet effected. I'm not limping, but it feels like I might soon. When I touch each of my fingers to my thumb going back and forth as fast as I can, my right hand can only do it about 2/3rds the speed of my left hand before I start missing or just can't go any faster.

The symptoms sometimes improve slightly the next day, but then are always worse than they were before on the next following day.

I had an MRI of the neck and brain back in November for probably unrelated symptoms but interestingly enough they were on the same side. I had slight paralysis and numbing but it was different in that my limbs felt heavy and I had numbing that came and went. I was told it was most likely a migraine. The other symptom that started then and has never stopped is that my left eyelid opens slower than my right if I've been laying down for a while(usually sleeping). If I wake up and don't get up, the left eyelid continues to open slower than the right. But if I sit up, it istantly clears and both eyelids open up at the same time.

I'm seeing a general practitioner at Stanford on Tuesday morning and I'm sure she'll refer me to a neurologist.


But in the mean time, I'm totally freaked out. I was mildly worried about something like MS over the last few months, but then I read about ALS and my symptoms seem spot on. Of course there are other things that could cause these symptoms? Right? But I'm still freaked out.
 

sorka

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Jul 29, 2006
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PALS
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CA
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BTW, if anyone can suggest a good clinic in the SF bay area that is experienced in DXs, I'd appreciate it. Thanks.
 

sorka

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PALS
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US
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Merced
Great! And the one thing that hasn't happened at all was the muscle twitching until now and just started in my forearm. My anxiety level is threw the roof.
 

Al

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On
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Hi sorka. First of all don't give up yet. There are a number of different things that can mimic some of the symptoms you are having. Try to stay calm. Not easy I know but you are probably making symptoms worse by freaking. I'd try to stay off the internet for a while until you can see a Neurologist. The more you read I'll bet you'll come up with more symptoms. Happens to a lot of people. Your symptoms really seem to be moving fast and that's not typical and especially for a young person. Stress can cause a lot of the things you are describing. Try to hang in there and relax. Maybe an anti anxiety med might be a good idea until you can get to see the neuro. Take Care. AL.
 

caregiver0204

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Jun 15, 2006
Messages
27
Reason
Loved one DX
Country
US
State
nv
City
carson
Don't push a DX

Don't push for a DX unless you are ready for it. Up your insurance. Take out long term care insurance, buy some or more life insurance. If you get the ALS DX you won't be able to change your insurance. I hope you don't have ALS, but if you do protect your self and your family.
 

joelc

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Abbotsford
Don't get too excited about rushing off and up'g your insurance. All companies have at least a 1 year clause. So you would be excluded anyway.
 

ljtaylor

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Jun 19, 2006
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PALS
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MD
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Westover
wondering about ALS diagnosis

Hi Sorka,

I know exactly what you are going through. It is so easy to imagine what we may have.
It took me over a year and a half to get a correct diagnosis. Everyone that has ALS is usually affected in different ways and rates of progression. Please for your mental health try to be as calm as you can. Your neurologist can order different tests for you and if he can't come up with something ask to be referred to neuromuscular specialist at a teaching hospital. always get a second and or third opinion if you do have it. It will help make it more real in the beginning because it is something you don't want to believe. Let us hope you have something else. Don't panic yet, you may have pinched nerves,etc. Best wishes.

Lois
 
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