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ladave

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Hi All-

I introduced myself on the other page (I'm newly diagnosed, pending some final elimination tests to rule out other possible causes). I'm 49 years old and have had symptoms for about 3 years- fasciculations, atrophy all up and down arms and into shoulders spreading into abdomen.

My question right now goes to the relation between fasciculations and atrophy. I've just noticed leg and foot fasciculations in the last couple of weeks. How much of a lead indicator of atrophy is this? Is there anything I can do to slow it down? I'm still walking okay but hearing the words "it is highly probable that you have motor neuron disease/als based on the results of your clinical exam and emg/nerve conduction tests" have got me obsessively noticing every little change in my body (not to mention depressed and terrified).

Thanks in advance for any responses.
 

hope

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I understand and sympathize with you regarding the fear you feel. It is terrifying to be in this. I have the fascillations also and some muscle atrophy. I was diagnosed with als in september but I asked for another opinion of which the next doctor said some things did not fit the criteria but also said it is als. I then ask for a third opinion and asked to see a als expert which I will be seeing next week. I am praying that the other doctors are wrong. I know how you feel. You do not know what to feel. Getting the opinion from an expert is the best advice I can give you right now and never give up hope. Muscle twitching can happen from many things. I wish I could say something that will take the fear away. I can say this you are not alone and this forum is filled with caring and kind people who truly care.

hope.
 

ladave

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Hope,

Thanks for the response. I am in a very frustrating position right now, having been told that I have a "strong probability" of having als due to evidence of motor neuron damage according to the emg and nerve conduction study, but not having a "confirmed" diagnosis. I have an appt. with the neuologist in charge of my case (at USC Med. Center) on February 27, when all of the tests will be completed but in the meantime I'm in never-never land (where I've been since these symptoms began about 3 years ago). I've read a lot of the info on als and it seems, regrettably, to provide an explanation for my symptoms (fasciculations in arms, shoulders, abdomen, leg, feet and tongue; atrophy in hands, arms and shoulders). But I can't really access the als experts unless I get a confirmed diagnosis.

Meantime my mind is playing tricks on me and I am extremely depressed. I'm angry at the neuologist who performed the emg/nerve conduction study for saying anything before all the tests were in (he claims I "pushed" him but all I did was ask what he thought). I've been misdiagnosed twice before on these symptoms and underwent an apparently unnecessary operation on my cervical spine- I'm learning this is not unusual and even happened to Dr. Richard Olney, the ALS expert who got ALS. I'm looking at those survival stats (50% dead three years from diagnosis) and wondering how a live-alone bachelor like me can hope to deal with the round-the-clock care that this disease would ultimately require. In short I'm scared out of my wits.
 

Al

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Hey Dave Al again. Have you registered with your local ALS Society or with Muscular Dystrophy Assn.? Do you have Community Care Access Centers down there? They have lots of resources to help you with this. My fasciculations started in my right calf in Dec. 02. I still get them and am still walking. Not fast or far but still walking. The ALS Society gave me a wheelchair last week for longer walks or when I need it. I used one in Vegas last June and had my son in law push me up and down the strip. 108 degrees out. He never complained once. Used a scooter at the US Air Force Museum in July. That saved a lot of time and sore legs. You have to keep limber but don't hurt them. If it hurts you've done too much and they don't regenerate like they used to. Hope this helps. Al.
 

ladave

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Al:

Thanks for the response. It is helpful. I'm so scared I'm going to lose everything at once. I have registered with the local ALSA chapter but they say they cannot really do anything until I get a difinitive diagnosis. It is pretty scary right now. Hearing that you're still mobile three-plus years in is very encouraging.
 

john McCarron

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Dave
I was told from the outset that this is disease is very variable and so it has proved not just to me but to many others. I was diagnosed in 2002. I still walk (not great distances), I go on holiday and still enjoy the odd beer. The early stages are the worst, mainly because you can have too much information. Try and establish your support network, I found the Association a great help. As for the fasciculation’s unfortunately this is part of the condition if this is causing discomfort I understand there some drugs which can relive the irritation.
 

braveheart

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Dec 14, 2005
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WAITING

Hi Dave, Was reading your info. I was diagnosed last August because it was progressing quickly. I've had symptoms for many years we realized.
My strength to carry on and have hope comes from my faith in God who as looked after all my needs all my life. I got a puppy too, since I am alone most of the time I really needed a companion, she is a handful but can be so sweet, has really helped my mood swings I already was on meds. for.
I figure there is nothing I can do about my disease, no one to blame, so
trusting God is my only hope
NOT having a for sure diagnosis must be so difficult, mine was easy so I didn't have to live in limbo.
Let us know what the verdict is, we really care.
 

ladave

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Thanks for the responses. John, the fasciculations themselves don't bother me that much, they just scare me about what might follow. Braveheart, and all, I have an appointment with the neurologist on Feb. 27 when I should get the final diagnosis- I'll let you know what happens.
 

vicky

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Feb 21, 2006
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Hello,

I am new on this forum. My father's sympthoms began at the end of 2004, there was a little problem with his speech and swallowing. He got a diagnosis in Nov. 2004 GERD, this is the reflux disease. In 2005 September he find weakness in his right hand, it is very hard him to write, button the shirt. He can not touch his little finger with this thumb. He had CT, MRI, MRA , the results: arachnoid cyst, ischaemic laesio on the left side of the brain, cervical spondylosis, chronic vascular encephalopathia and vertebral abnormality (on the left side), which go along next to the brain sterm. Our neurologist made an EMG,ENG and it showed axonal denervation, fasciculations, positive sharps. They said it is ALS. We asked them to do Lyme, immun examination too. We are still waiting for the result of them. But we will have a surgery this week because of this abnormality in the brain sterm. Our other doctor said that this problem can cause the symphtoms.

Could anybody explain me the relationship between fasciculation and atrophy? Can you have fasciculation in the atrophed muscle?
My father has problem with his speech and with his right hand, but it is not so terrible. If he has ALS, what type has he, bulbar or limb onset?

Thanks for everybody an answer.

P.S. I am from Hungary, from Europe, hoping you can understand me, but my English is not perfect.
 

lwebb3

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I am not a doctor and do not know a large ampunt about ALS, but i do know when you get ALS no matter where you start, you will get the whole package.
 
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