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PBA673

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Hello all and thanks for this forum - what a great place for people who are struggling with all the awful symptoms and the possibility of this scary disease.

I seem to have a problem that's different than most. I actually had an EMG yesterday that was positive for denervation in 2 limbs but my doctor (Jefferson Hospital Neurology) is convinced it NOT ALS. Here is my story, I am curious to see what people who live with the disease daily think about it.

In August 2007 my son was in the hospital for a couple of days for an intestinal intussuseption (he is fine now). After staying with him at the hospital, my husband and myself (and even our house guest) have all come down with flu-like symptoms (swollen glands, fever, etc). While my husband and the guest got better in about a week, I developed severe nausea. That went on for about 2.5 weeks during which I had an endoscopy and MRCP (MRI of abdomen) which showed nothing but mild gastritis which was unlikely to cause so much nausea. That went away and was replaced with my first neuro symptoms, headache, severe neck pain and lots of numbness/tingling in the face, temples, jaw and back and top of the head. That went on for a couple of weeks during which I went to the chiropractor and had MRIs of the c-spine (normal) and brain, which showed some non-specific changes in the white matter with broad differential diagnosis, most likely migraines. MRA of the brain was also normal. Then the neck pain got better, face stoped tingling and the head numbness went away only to be replaced with tingling and numbness in both arms and pretty major fatigue. I also seem to be very sensitive to cold (not heat), losing hair like crazy and have joints that are unbelievably loud (never could even crack my knuckles before this). At this point, I have muscle twitching in all areas (which does seem to be getting sparser and better with a lot of stretching), generalized fatigue, problems sleeping (dah!), shooting joint pains and muscle aches that are mostly of the burning kind (even my tongue feels like I burned it once in a while). My feet seem to be tingly most of the time. I have no trouble lifting things even though my muscles do start to burn after about 1 minute of holding my 2-year-old. I am not tripping or falling and I don't really drop things except occasionally from inattention. My strength seems to be fine on the neuro exam (dr said 5 out of 5), I don't think I have the Babinski or Hoffman's even though I do have some hyper reflexes. NCV testing was all fine.
At this point the doctor thinks I had an unusual presentation of Guillain-Barre which caused auto-immune symptoms and peripheral neuropathy. I haven't had any blood work done yet but she wants me to do that, spinal tap, MRIs of lumbar and thorasic regions, SSEP and skin biopsy.
I am seeing Dr. McCloskey at the ALS Clinic at Penn for a second opinion next week (I am amazed at how quickly I got the appointment!).
Any thoughts from the experienced group? Any symptoms that stick out for you as non-ALS-like? With everything that's out there, it's really hard to decipher what could or could not be ALS.
THANKS!
 

lhagsjr

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Holy Crap...

Im going to Jeff tomorrow as my 2nd opinion to Dr. McCluskey. We are doing the same thing but backwards.... Did Dr. De Sousa do yours? How long was your EMG?
 

PBA673

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Emg

That is indeed pretty amazing. I saw Dr. Katz at Jeff and my EMG took 2 appointments, the machine broke during my NCV the first time. The EMG took about 20 minutes I would say and it didn't really hurt, I was surprised. I disliked the NCV shocks more. Dr Katz is pretty thorough but I am not sure I understood her reasoning. I am getting a copy of my records so I can read and understand her position more.
I understand McCloskey is the top ALS guy in the Philly area. What's your impression of him?
 

lhagsjr

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Dr. McCluskey

is definitely the top ALS doc in Philadelphia for sure, he is a really nice guy but unfortunately he didnt get me any answers. His EMG was 45 minutes long. I didnt have any signs of denervation but there is definitely a problem here. Im seeing Dr. Dalakas at Jeff but Dr. DeSousa is supposedly the EMG expert, they told you your results at Jeff right then and there?...
 

Al

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I'm not a doctor but would bet on a virus or auto immune disorder.
AL.
 

PBA673

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thanks

Thanks, Al. I know you are not a doctor but your experience with the disease counts for a lot.
Hope today has been a good day.
 

PBA673

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Yes, at Jeff they tell you EMG results right away. Pretty cool.
 

crystalkk

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PBA673

How are you feeling?
I just wanted to see how your appointment with Dr. McCloskey went?
I am a patient of Dr. McCloskey's as well. I am not diagnosed. yet
I started out at jefferson as well with Dr. Mandell, I believe he shares an office with Dr. Katz.
 

myooshka

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I'd like to know how you make out. I'm still not diagnosed and half to say you sound a lot like me, my dr says it's as if mine may have been brought on by a virus. I had the tingling, shooting pain, twithching,pain in joints and muscles, burning etc not a typical onset and my joints all became very loud, cracked and snap with movement. I tried to pm you but I see you don't have this option yet. Mya
 

myooshka

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One more thing what is ssep and why the skin biopsy?
 

ariz4me

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Hi,

I had a positive EMG from neuro. He states in his report that the study indicates a motor neuron disease. I have left arm weakness (only in the elbow area when I am performing a bicep curl action with weight), slight atrophy in my forearm, burning pains shooting down from my neck into my shoulder blades and down my arms. I also get tingling and numbness. This has been going on for 19 months with no progression of the atrophy or weakness. The neurologist also did an MRI which showed that I have spinal stenosis, bulging discs and areas within my neck where the stenosis and discs are pressing on the ventral side of the spinal cord. With all this, the neuro believes I may or may not have als. I finally went to Penn Orthopeadic and saw a doctor there. After reading all my reports, he indicated that my symptoms are indicative of a spinal problem and are not consistent with ALS. He sends me to a neurosurgeon at Penn who saw the ALS reports and is now sending me to Dr. McCloskey at Penn for another EMG. I am a nervous wreck. However, all the things I have read on ALS indicate that if there are other things which may cause my symptoms, ALS cannot be given as a firm diagnosis. Am I correct? Also, after 19 months and no other symptoms of muscle weakness or atrophy could it be coming just from the neck?

Help!
 

Al

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I'd bet on the neck myself. I have a friend who was initially diagnosed with ALS and about a year later they found spinal stenosis. He refused an operation and 2 years later he's still the same. Second and third opinions are a good idea.

AL.
 

buddy77

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I was told that any sort of spinal stenosis can result in an abnormal EMG. The spinal cord itself gets damaged and then causes an impact in the muscles affected. But this is generally a very slow process that takes place over many years and progression in symptoms is slow and may even stop. So, even if one has a positive EMG, it doesn't necessarily mean you have ALS, just means that communication between your muscles and your brain has been impaired, of which could be caused by many reasons, spinal stenosis being one of them, which is more common than ALS.
 

rose

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ariz4me,

Tracy's (tag0620) husband initially received an incorrect diagnosis of ALS. (He too had a positive EMG) It was finally discovered that his problems were due to spine injury from a skiing accident. You can go to her profile page, choose the "statistics" tab, and then threads started by her, and read what an amazing journey it was for them to get to the truth. If it had not been for her tenacity, her husband would still be living with an ALS diagnosis, and no treatment. As it is, he had rather complicated back surgery. She has not posted recently, so I'm not sure how he is coming along after the procedure.

Good luck to you. Don't give up.

ps, to locate a member, look up at the top of this page, where it says "community" click this, and choose "members list" from pull down menu.
 

Erica

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Arize4me,
Spinal stenosis in cervical and lumbar spine can cause abnormal (denervation)EMG. In addition, burning /shooting pain is more indicative of nerve impingement then denervation.
Was your EMG perfomed only on your arm, or did they test other area? Do you have a copy of your EMG report?
Your 2nd EMG must be performed by trained neuromuscular specialist.
In addition, a myelogram of the cervical spine can shed more light on your nerve root involvement.
Good luck, Erica
 
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