possible ALS

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yorky48

New member
Joined
May 21, 2019
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Reason
Learn about ALS
Diagnosis
05/2019
Country
UK
State
SY
Hi

im male, 48, from England. I have a few questions and thought it would be a good place to ask
Ive read the sticky
Ive been having weakness in both my thighs and pains in my knees when I try and rise from a chair or walk up stairs for around 9 months. I also noticed a few weeks later that I also had weakness in both forearms and fatigue in my hands if I did anything repetitive or longer than 10 seconds. I also think my hands look and definitely my forearms look thinner. These symptoms have all slowly been getting worse since I first noticed them 9 months ago.

Around Christmas time I noticed my right thigh muscles were noticeably thinner than my left.
I went to see my GP and had both knees checked via xray and no arthritis was seen and are normal.
Ive also had blood tests and my CK came back slightly elevated at 200.
Around this time I noticed swallowing issues and felt like I couldn't swallow saliva or dry food but was ok with a drink.

I saw a rheumatologist who agreed I had right leg wastage and organised an MRI to check the thigh muscle and also an EMG/nerve study back in January this year.

The EMG/Nerve Study was done on 4 muscles on my right side, Ankle area, a thigh muscle, forearm muscle and shoulder. He did not test any muscles on my left or my bulbar region. During the test the only thing the specialist asked me was if I had had any sciatic problems. I hadn't. I did notice during the test the machine was silent until I moved my leg and then a mass of noise came from the machine. Unsure if that was a good or bad thing.

The results were sent to my rheumy and were said to be normal. Im from the UK so I did not get to see my results or have a copy of them.

I was happy that they said no ALS but still didn't have any answers for my symptoms. The rheumy said there was nothing more he could do as my CK was not very high and I should go back to my GP.

However, I continue to go downhill since then. My thighs and knees hurt more when I bend and ive developed wastage and weakness around my right ankle. When I raise from a chair or the floor my knees are now making a grinding noise so im wondering if the wastage has gotten worse and my thighs are no longer supporting my knees correctly and they are now misaligned. I have also started with full body tremors (worse in hands) and cramping in both calfs. I get some twitches but only very occasionally.


My questions are:

Is it possible for the specialist to have missed ALS on the EMG/Nerve Study? I was definitely as the stage where I was getting weakness and showing wastage so if it was ALS I would have thought it would have been seen. Would the specialist have to have put it on the exact muscle on the left leg that is showing atrophy or would ALS show on any muscle? He definitely checked the correct leg.

Would it be very unusual to get ALS/mnd in all 4 limbs at once noticed at a similar time and all at a similar level of weakness? Rather than one limb at a time and spreading from there. I have only noticed wastage on my right leg only.

I also have quite a few androgen problems. Gynecomastia, ED. low libido etc. With these symptoms and my muscle weakness, I wondered if could have kennedys disease. As i've heard it also affects lower motor neurons, would Kennedys disease have also shown abnormalities on my EMG/Nerve study?

Ive had this for at least 9 months since I noticed weakness and wastage in my thighs. Would I be in a much worse state rather than just slightly more painful knees and slightly weaker thighs if this was ALS. Ive heard you can deteriorate fast with ALS.

thanks
 
The EMG would have been unlikely to have missed ALS, because denervation is usually widespread with ALS, even in asymptotic muscles.

I believe Kennedy’s disease would show EMG changes as it involves lower motor neurons.

You could have an endocrine problem. A number of endocrine problems can affect muscle mass, particularly if testosterone levels are low. I would recommend seeing an endocrinologist if you haven’t already.

I’ll also add that a lot of the hormone systems are interconnected. E.g., if someone has a pituitary gland tumor, it can throw off all their sex hormones as well as thyroid. Endocrinologists are skilled at sorting this all out.

There could also be other neurological conditions at play. But ALS does not seem to be underlying your problems.
 
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