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lhagsjr

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Hi All,
Soon my wait will be over as I finally get my appointment with a NeuroMuscular specialist on Tuesday. Personally Im l100% sure I have ALS. The fasiculations are horrendous. They are on the bottom of my feet, the side of my feet, above my ankes on the side, calves, hamstrings, under my ribs, hands, forearms, biceps, triceps, neck(rarely), shoulder. They are sometimes very violent and sometimes subtle. This has been going on for 7 months. Also my facial muscles dont necessarily twitch but they spasm.
My understanding of the words muscle atrophy is the decrease in muscle mass. This is definitely the case in my biceps, triceps. I also think my shoulder muscles have decreased but that I cant guarantee you. I know for sure my arms have lost a significant amount of mass.
These 2 symptoms combined point directly to ALS is what I understood. However, people on here continually say it could be 1000 other diseases. Can someone give me maybe 5 other things it could be? I just want some hope that its not ALS.
Another odd symptom is all my joints now "crackle" horribly. My shoulders, wrist, elbows, ankles. They crack very loud when moved.
I do have a few positive things to say that gives me some hope that I do not have ALS.
1.) I really do not have any noticeable weakness. I have no problem walking, holding things in my hands, carrying things, etc.
2.) I have no bulbar symptoms. I can eat and breath without any problem. Actually, I was in the hospital in October for another reason(appendix) and they checked my respiratory values. I had like 98 capacity.
3.) Im 28. I know its not impossible to have ALS at this age, but its very rare.
4.) I had a Nerve Conduction Study done which came back completely clean.
4.) I had an EMG done of my right side only(because I had twitching everywhere) by a regular neurologist and it came back mostly clean. 7 of 8 muscles where 100% clean. One muscle, gastroc, showed increased insertational activity which the neuro said was non-diagnostic alone. Does anyone know what this means? He basically said its nothing if this is the only slightly abnormal finding. This was in March.

I just want to believe in my heart I dont have ALS but it doesnt look good. I know anyone who has ALS that it is terrible but this is truely a tragic story. I was married last June('06) and this all started in October. Newlyweds. This is just terrible. I have thought about suicide once. I use to be the happiest person in the world, just one year ago.

Please give your opinions.

Thanks,
Lou
 

shannonme

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Hi Lou-

I'm going to make a case for you to remain optimistic:

*Mom's neurologist/ ALS specialist told us that ALS typically attacks a specific area at a time and then moves on to a new one. Mom's started on her right side. She was dropping things, dragging her right foot, tripping and falling long before the fasciculations.

*ALS is extrememly rare.

*I've never heard of clicking joints as a symptom of ALS.

*Weakness in mom's limbs came long before any noticeable muscle wasting.

I hope you get good news on Tuesday. I think you have great reason to be optimistic. I can't name other illnesses you could have. My mother was diagnosed very quickly before I had a chance to investigate other options. I hope they find something easily cured so you have many healthy years with your bride. Keep us posted!

Shannon
 

ltr

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Lou - it really concerns me that you thought of suicide once. Please tell me that if you ever feel this way again, you will go to the ER or call someone to stay with you immediately. Better yet, tell me that you are more accepting of what is happening to you and you are ready to fight it. Many of us have symptoms like yours, so don't write yourself off to als yet. I would assume you have had a thorough workup? Did you have a lyme test, mri's for MS, acetylcholine for MG and the list goes on! Also, have you looked up BFS? From all that I have read, in als weakness comes first-before the twitching, before anything. So, hold on and keep looking for other things to rule in or out. Let us know which ones you have been tested for and definitely let us know how your appt. goes. Good luck. Leslie
 

lisa1215

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Hi Lou

So sorry to hear about your symptoms, but I have to say that with ALS there should be some evidence of it on the EMG..The fact that it came back pretty good is great news..I don't doubt there is something going on, but hopefully it isn't ALS..

I would have just said the same things Leslie did, and one other test my neuro did on me was a copper serum blood test. I guess a copper deficiency can mimic ALS symptoms as well..If you haven't had that, you could ask your Doc at the next appt about it.

Good luck- I wish you well..

Lisa
 

Jamiet

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Lou,

you stated a good case why you should not have it. Just the fact that your 24 is about the best one. It's very rare...very! Like less than 1% of cases are yougner than 25.....

YOu do have some signs that are something to be worried about, but, i dont' think you should worry to much. The twitches are usually benign when not accompanied by weakness or wasting.

I think LTR named the others, but if you go to the MDA's website, it list all the musclar diseases, you can see if you fit any others. There are Mystenthia Gravis, Multiple Sclerosis, LYME DISEASE ! , Isaacs Syndrome, MFN, and i can keep going..... Go to canlyme.com and look up the symptoms.....you'll be amazed

I would look hard into lyme disease. Send your blood to IGENEX labs for a full (6050) screeing panel, which is the ELISA, Western Blot (IGG & IGM), PCR DNA. Lyme can cause alot of CNS issues.

The one thing that concerns me, is the muscle loss.....you have just probably been stessed and lost weight.... Start eating right, go excercise.....

See how your stamina is? Is your stamina while walking, working, typing, etc etc good?

I have exactly what you describe...all of them same as you. I have more though, my tongue. How is your tongue? Your voice? How about your feet, are you shoes loose or your ankles loosing size?
I'm not diag either......

If you have antoher EMG, after 7 months of twithcing and it's clean...your clean!
The reason why, is that twitching comes from an aggrivated muscle....or deneverated muscle when its ALS so, after a few months, where there has been enough twitching to know there is issues, they should show up on the EMG. If thie EMG is clean......go party and drink one for me...!

You'll be ok buddy..Hang in there....go make a baby with your new wife....they will be the love of your life.......

Take Care

Jamie
 

ltr

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Lisa points out something many of us forget is part of a thorough workup and that is a urine for heavy metals. Also, there is the blood test for cholinesterase which will show if you got into some pesticide or poison. I think everyone made some really good points, Lou, so get your fighting gloves on!
 

vantec

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Lou,

I have a lot of the symptoms you have, but I have profound weakness. I think you can rule out ALS, if you don't have weakness.

Conrad
 

BWk

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I don't know for sure of coarse, but it sounds like it could be something else and don't ever think of suicide, if you have something else it could be many yrs. before the disease would take you and a cure could be found. You can always pm me if you would like if you have further questions or need support or whatever. Barry
 

vmd

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This discussion raises the question about what one means by weakness in ALS. Is the type of weakness that neurologists look for profound weakness or progressive or both? I'm assuming the answer is both. How do neurologists measure weakness when they test? I'm scheduled to see the neurologist this coming week.
 

ltr

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During my exam they had me squeeze their fingers, push my leg, bent at the knee, up into their hand. The doc put his hand behind my ankle and had me push against it, then switched his hand to the front and had me push against it, push my foot down against his hand and the same type of exercises with my arms. One doc had me do a squat, walk on toes and heels.

Right now I am having a dilemma over a Western blot Lyme test which is apparently positive to some, but not to others. Hard to tell if I will be getting treated for that or not. It certainly would explain a lot.
 

CindyM

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Oh Leslie! I hope it is Lyme! That would be wonderful! Cindy
 

ltr

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Thanks Cindy. The docs are saying negative (with a good portion of the test saying positive), but research and a member of this forum who looked at it are saying positive. I don't know what to think and don't have the money to go to a real lyme doc, so I have to depend on these guys for now. I have an appt. to see the infectious disease doc who drew it. He is a very nice doc and seems intelligent, but I guess there is much controversy with lyme. By the way, I had a bullseye (small, quarter size) in 2005---6 months before this illness struck me. 2 days ago I lost my balance in a store and went with arm flailing about 4 feet catching it back! Then, last night I fell off one of those tall kitchen chairs I have onto my side on the floor. So, I am getting worse and really worried. Anyway, I will let you know how it turns out. Leslie
 
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