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mrkllauer

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Jan 22, 2014
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12
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Learn about ALS
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US
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Ca
City
Riverside
Hi everyone my name is Mark. I've been here a lot over the past year. Most of what I have going on would suggest ALS. I have read a lot of the information regarding the EMG other things done to help determine a diagnosis. EMG done in 2010 with abnormalities in right arm, (but they say that was due to scar tissue from previous cervical Fusion done in 2007 to stop at atrophy in right arm). Since then right arm continues and my left arm and left leg are now atrophying quickly, especially left inner arm and triceps, both sides sides my upper back now atrophying as well. I have lost 10% body mass since July of this year. Sudden loss of mass follows a a C 3 through C 7 laminectomy. Performed to stop the atrophy in the right arm and beginning left arm atrophy. Since surgery left arm and left leg and upper back has loss mass very rapidly. A new EMG was done in December 2013. Only my right arm and right leg were tested at the time. Definite abnormalities this time with the right arm, which doctor says he expected because of the surgery in July 2013 but shows nothing in the right leg. I had no signs of atrophy in the right leg, just knee pain and swelling and constant muscle ache. As I continue to wither away an endoscopy, a colonoscopy an echocardiogram have all been ordered. I do not eat very much and filled up with small amount of food. Hands and feet get instantly cold. I wear wool gloves in wool socks around the house. Just recently the fat pads on my feet have begun to atrophy. Seems to be getting harder by the day to extend my left and right arm fully out. I stretch my muscles daily but they seem to get nowhere. Legs get thinner and weaker by the day. It takes effort to move the limbs of my body. So my big question, could the results of EMG be inaccurate. With what I am feeling, is there a possibility that and EMG should be done on the affected areas? And is it possible with the cervical laminectomy will I get accurate EMG results anyway. Sidenote, I also feel that the symptoms and signs and I have are in line with the cachexia. I appreciate any responses and any suggestions. It gets very discouraging to see my body wasting away without any answers. Thanks to all who read this and God bless.
 
I am only 47. First surgery was c6 c7 fusion. Both hands difficulties and with buttons and small objects. Sometimes I can't tell if fingers are numb and tingling or cold. Walking difficulties beginning due legs getting smaller. Just some more info. Thank you.
 
I had a c2-3 fusion and they did MRI to determine if impingment was the problem. Have you had an MRI?
 
MRI, ct scan, all shows normal except enlarged and Para aortic lymph like left abdominal area.
 
Mylegram, spinal tap just about everything. I know numbness and tingling puts me out of ALS, did not have numbness tingling until after surgery. Surgeon says that will go away. Although it hasn't. So, those who read please do not rule me out because of the numbness and tingling and tingling in hands. Please consider my question on the EMG. My body twitches like crazy. Like little electric currents firing off. Within the past four days my hands and fingers have really taken a dive, holding phone to text and type is becoming harder. Right abdominal wall ripples all the time. Both calfs cramp all the time and just recently inner thighs especially under knees began feeling like they want to cramp.
 
I am hoping one of the gurus here would answer question on EMG and how scar tissue from major neck surgery affects results. I mean gurus in the most kindest of ways. Docs have no answers for me and I continue to loss muscle daily.

Docs are now doing test for cancers. Seemed to have ruled out any neuromuscular disease based on EMG.

Inconclusive is what doc doing EMG told me. Says I could not give him full participation and my body would not fully relax and could not provide the resistance needed. I only have so much muscle left to give him the resistance needed for test. My body does not relax. When I lie flat it is like bolts of electricity shoot through my body and is on constant vibrate.

Swallowing and breathing is recently becoming more labored.
 
I think what they are saying is that the surgery and scar tissue could disrupt the pathways that the EMG measures.
I am glad they are looking away from ALS and hope they can quickly find a treatable cause for your suffering. Good luck
 
Went to ER yesterday because of continued pain in middle of chest along with difficulty breathing. EKG, more blood work, chest xray. To no surprise all normal.

I did explain cold hands and fingers and feet and toes and how it goes in spells. A nurse mentioned Raynaud's phenomenon which can accompany scleroderma.

Thoughts anyone.
 
So could that mean EMG might not be a defining factor?
 
Until I am diagnosed, I will continued to post what is happening to my body. Maybe someone reading will hear a bell go off.

As muscles get smaller a line starts to be noticeable. Kinda of like a fault line. Not just a line but indentation in the muscle that runs length wise. Muscle are flattening out. Fingers more comfortable in curled position.

Is there a place to post or see pics?
 
Until I am diagnosed, I will continued to post what is happening to my body.

If your doctors are saying everything points away from ALS why would you continue posting here constantly?

Do you have any understanding at all how advanced PALS use their technology and the amount of time and enormous effort it is? (rhetorical, please don't reply) I really don't mean to sound harsh, but why would you feel that these PALS who come here for their own support should put in this kind of effort when it is your doctors that you need to continue seeing and telling what is happening to your body.

Honestly, ALS PROGRESSES. IF you do have it, you will waste away like you won't believe and it will be obvious to everyone and you will get diagnosed. Posting every little thing here will only increase your stress.

Please work with your doctors, it sounds as though you have some complex issues from other health issues and past surgeries. Spend your energy finding a doctor you can really trust to work through diagnosed process with you.

I hope you find the answers with medical assistance
 
Wow! As many people that read this forum looking for help I thought that others experiencing what I am might read and suggest an answer, because not every one who visits this forum is diagnosed. Or if and when diagnosed maybe someone searching reading the post could help them in their search for an answer.

Did not mean to clog your forum. 7 post whew!

Many people posts here and honestly have never seen such a rude reply.
For you to judge i don't understand what ALS patience go through your grossly out of place. Would you care to see the book of reports from doctors. Don't tell me how to spend my time.

Nothing has pointed away from ALS except an "inconclusive" EMG. My wife has watch my body drop 20 lbs in 10 months for no reason. She explains it as holding a bag of bones. Atrophy is there and has gone quick.

Sorry if I offend anyone while I seek answers. Thought this was a place for people to help each.

P.S only became member two days ago. So I don't get the keep posting thing.
 
"I've been here a lot over the past year." Two days ago? "Most of what I have going on would suggest ALS." Nope. I've read your posts and my unqualified opinion is... FULL BLOWN, UNTREATED, GOOD OLD FASHION.. STRESS AND SELF INFLICTED ANXIETY. Someday you may learn the insidious power of both. Hope you get the care you really need.
 
People can be a bit impatient on this forum, I read here but don't post. I hope I can be of some help. I had a l4/l5 fusion when the neurologist (incorrectly) believed i had a herniated disc. This resulted in extensive sensory issues with body wide tingling and odd "numbness", which complicated everything. It took four years and 7 inconclusive EMGs to finally receive a PMA diagnosis: lower motor neuron variant of als. I don't say this to scare you, but to emphasize that neurology is complex and answers can be hard to find. My best advice is to continue paying attention to your symptoms and make them known to your Doc. With time and tests I hope they find a treatable reason for your problems, try not to get discouraged!
 
!

Many people posts here and honestly have never seen such a rude reply.
For you to judge i don't understand what ALS patience go through your grossly out of place. Would you care to see the book of reports from doctors. Don't tell me how to spend my time.

Want to see a rude reply that tops Tillie's?

You have no friggin' idea what PALS go through so don't even go there. if you live with this every day either as a caregiver or a patient, then we can talk. Until then, you simply won't take no for an answer. Everyone keeps telling you that this doesn't sound like ALS and you keep insisting that it does to you but with no support whatsoever.

You can post all you want; it is a free country and free speech is encouraged but whinning and 'woe is my' worry doesn't sell well here nor should it nor should it anywhere. Suck it up. Go find a doctor.
 
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