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What is my diagnosis- New here:(

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jaimebpac

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This is my first time writing. I had started with muscle atrophy proximally in my leg. It has since moved to my other leg and left deltoid. I have a difficult time going up the steps.
I am scared! I had an EMG and it showed a MND/anterior horn cell disease. On clinical exam, I have no upper motor neuron signs/ only brisk reflexes on the knees symmetrically.

I have mild weakness, fasiculations, muscle atrophy. I have seen two specialists, and I do not have a diagnosis thus far. All other tests came back negative including blood work and spinal tap.

Has anyone else been in this situation- not having a diagnosis for a while, and what do you do?
 

Erica

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Same situation

I have exactly same situation (only my atrophy in proximal arm and shoulder) and no final diagnosis.
Do you have any pain in your leg? I started with severe pain and atrophy joined 2 mo later.
Now have throat and tongue pain on the same side as my "problem" arm and pain with swallowing.
 

jaimebpac

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Wow. It is so strange. I am so scared, frustrated, worried... I have severe pain in my leg where the atrophy is and it feels like someone is carving my muscle out of my leg? Did you get an EMG
 

hopingforcure

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Hi Jamie,
We alll can tell you that this thing is not a quick diagnosed. Have you been referred to a specialist? Sounds like that may be your next step. We are here for you to lean and help you find your way with this thing, sorry you are here, glad you found us.
 

jaimebpac

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Thank you. I am so scared, just like all of you probably are. I wonder how to get through each day. I appreciate your quick response. I have been to two ALS specialists. What do I do now? Does it sound like your situation or can you give me any advice?

Thank you
 

Erica

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I have exactly same type of pain, it feels like someone is pulling carving knife thru my upper arm.
Initially Ionly had pain now have fascics. Had EMG yestrday, was told it's unremarkable for ALS and Ineed to see a neuromuscular specialist.
Do you know if majority of ALS cases have some abnormality on EMG?

Wow. It is so strange. I am so scared, frustrated, worried... I have severe pain in my leg where the atrophy is and it feels like someone is carving my muscle out of my leg? Did you get an EMG
 

hopingforcure

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They absolutely usually do have abnormality on EMG.. Absolutely...
 

jaimebpac

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I had an EMG by a neuro and it was negative. I was sent to a neuromus. spec. and repeat of EMG 7 weeks later revealed what I mentioned above.

Do I just wait for a diagnosis. Is there anything else I should do?
 

jaimebpac

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Thank you for your reply,

My EMG revealed anterior horn cell disease. the ALS Center said it could be ALS, West Nile Virus (although not progressive), or a certain kind of lymphoma. All my other tests are negative. Is it normal for doctors to just do watchful waiting? Did they do a trial of IVIG on you?
 

Erica

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I suggest for you to get a Chest CT which could help rule out Lymphoma.
Did they do EMG on all of your extremities or only on your problematic leg?
 

jaimebpac

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I suggest for you to get a Chest CT which could help rule out Lymphoma.
Did they do EMG on all of your extremities or only on your problematic leg?
The first ALS specialist did not order a Chest CT, but my second opinion did order a CT of the chest, abdomen and pelvis (just in case). I just seen her. So what kind of lymphoma would it be? I tried looking it up but there are so many lymphomas. They did the EMG on both legs and one arm- which was all consistent. I am so angry, mad, scared, nervous....
 

Danijela

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Hello. Sorry to hear about your symptoms and uncertainty.

I am confused by the terminology here. In the UK people are diagnosed with MND (motor neuron disease) which is used as umbrella term for ALS, PMA and PLS. Anterior horn disease means there is some damage in the spinal cord (usually indicating lower motor neuron damage).

"They did the EMG on both legs and one arm- which was all consistent. " What do you mean by this, what was your EMG consistent with?
 

jaimebpac

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Hello. Sorry to hear about your symptoms and uncertainty.

I am confused by the terminology here. In the UK people are diagnosed with MND (motor neuron disease) which is used as umbrella term for ALS, PMA and PLS. Anterior horn disease means there is some damage in the spinal cord (usually indicating lower motor neuron damage).

"They did the EMG on both legs and one arm- which was all consistent. " What do you mean by this, what was your EMG consistent with?
Well, the doctor said my EMG revealed anterior horn cell disease in the arm and both legs. They did not give me a definitive diagnosis because it is too early....? On the EMG paper, it says MND/anterior horn cell disease. It is confusing for me too. All other tests are negative like blood work, spinal tap, MRI's. They recommended IVIG to have a trial to rule out autoimmune even though the EMG did not have a conduction block and spinal tap was negative. Anti GM 1 antibodies were also negative.

I am confused of where this leaves me. Any advice?
 

hopingforcure

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What ALS clinic or doctor do you see?
 

mare

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Jaime-

Can you elaborate about your weakness in your legs? You say mild weakness, but you have trouble going up stairs? Do you have foot drop? How far can you walk before you need to sit down?
The thing that is not typical is the severe pain.

Do you have weakness in your shoulder?- you mention atrophy there.
How long has all this been going on?
 
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