More progression of my Symptoms

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ryli

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Joined
May 16, 2019
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25
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
ON
City
Sudbury
Hello,

I have been progressing with weakness and atrophy in my feet legs, hands, shoulders and most likely deltoids... I had a muscle biopsy in March of the vastus Lateralis that showed a Myopathy with type 2 atrophy and a necrotic muscle fibre. My emg showed the same Chronic neurogenic change with large units as previously seen in the TA. I have weakness and wasting of left hand. 4/5.

I was tested for Inclusion Body Myositis but was negative... Neuro is seeing me in Sept to do a gene panel for Charcot Marie Tooth and repeat NCV and EMG. I am having a brain MRI on July 1. We keep eliminating everything with no answers yet... not much left to check..

Would anyone know if CMT late onset has wasting in other than hands and legs/ feet? If it isn’t that, there isn’t much left that includes fasciculation with cramps weakness and wasting etc.

Thanks for your input, much appreciated..
 
Past threads here:


 
Im sorry If I wasn't clear about what I was asking, this is difficult to describe.... and thanks for any replies. Did anyone in the process of diagnosis of ALS have a differential diagnosis of CMT disease? It doesn't fit exactly with what I am experiencing. I can no longer open some ziploc bags and I can't squeeze product out of a tube if it isn't full. My grip strength in my left hand is almost gone, depends what I am trying to do. I can't lift a pot of anything from the counter to the stove with my left hand.
 
You can certainly have upper extremity weakness from cmt. It usually starts in lower extremities and spreads but there are exceptions to all rules. Why wait on gene testing ? Can’t they do it now and then you would ( presumably) have the results for your appointment?
 
Thanks for your reply Nikki. I am in a small city and my Specialist is 4 hours away. He said that he hopes Covid-19 has settled down by then so that I can go in and get the bloodwork done and a repeat EMG and NCV. Thanks for your suggestion, I am going to call on Monday and see if I can have the gene test at my hospital. Not sure if all hospitals collect for gene bloodwork.
 
I don’t think testing is complicated. It is probably one tube of blood that gets sent to a special lab. I doubt they do the test itself inhouse at your neuro.
 
Oh I see. Well I will certainly ask on Monday. It's already a long process to figure this out so why delay what can be done. Thanks for the tip.

I though of something else I can't do...open a banana without cutting it with a knife. Sounds weird doesn't it.
 
I looked up the testing. Deciding exactly which test or combination of tests is the tricky part so he might want to see you again to narrow it down.
bananas are tricky
 
Thanks Nikki. I guess you're right, he may want to see how much I've progressed or maybe he wants to do the NCV and EMG again before he decides? Maybe something will pop out at him during them..

The banana is a problem, very tricky but right now I'm more worried about my balance an weakness in my feet. I just fell over from a squatting position while I was pulling laundry out of the machine. I hurt my wrist trying to stop my fall. Luckily i was only 1 ft from the concrete floor. I wish I could get an answer soon.
 
Until then.... do self help. Stop reading about ALS and stop following this Forum.
(You've posted 22 messages and started 3 Threads.)

I see you are still on line here. There isn't anything else anyone here can help
you with... until after you have the NCV and EMG. Again.

At the bottom of the EMG report will be a "Summary/Conclusion" where the
Neurologist gives his/her findings. Post that and maybe the first one too.

At least you can handle the knife... for your banana. Be careful with it. :)
 
Will do thank you. :)
 
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