Questions about my symptoms.

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RogerC53

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Was diagnosed with MND/ALS last August and have been struggling with acceptance of the disease. I was diagnosed at Stanford by an ALS specialist (excellent doctor) who reviewed my diagnosis with his colleagues and they agreed.

My problem is that some of my symptoms just don’t seem to match up with what I have read about MND/ALS on forums and research sites. I do have weak limbs, cramping, spasms, and twitching, breathing problems, lack of dexterity. My voice is getting weaker and gravely and slight swallowing problems. So I do have a lot of the symptoms.

Below are the symptoms that seem not to align with MND/ALS.
First, my muscles get really sore when I use them. My arms and legs feel like they are cast iron and getting heavy. On a couple of rare occasions my hand dexterity will slightly improve for part of a day.

I just want to know if others have had similar symptoms that don’t align with typical MND/ALS symptoms.

I don’t want this disease and I may just be looking for any signs that point in a different direction.

Your thoughts and responses are appreciated.
Roger
 

KarenNWendyn

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Do you have a copy of your most recent EMG? If you want to post that (the EMG part), we could look at it and comment. You’re correct that sore muscles and dexterity improving during the day would not be expected with ALS, but I believe you also have some autoimmune conditions.

Have you asked the doctor who diagnosed you what criteria led them to that conclusion?
And finally, are your symptoms progressing?
And any upper motor neuron signs?
 

lgelb

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I'm very sorry to hear about your diagnosis, Roger. Even given it was made at Stanford, I would get a second opinion from another institution if you have not as yet -- there are a number of excellent centers in the Bay Area, such as UCSF and Sutter/Forbes. To post the EMG, click "attach files" below the box where you type your post.

As Karen mentions, autoimmune conditions don't fade out with an ALS dx. If you try to use your muscles more than they can handle, soreness out of muscle strain/fatigue is not unknown in ALS per se, either -- the difference from, say, MS, is that the sensory nerves are not involved, so it is not prickly, sharp or shooting pain, for example, although anyone can get that at times for other reasons than overuse.

Karen is also right that more important than whether your dexterity has some waxing and waning is whether your weakness is progressing overall, either within the original site(s) of onset, or to new muscles where there has not previously been a problem. However, progressive weakness can be ascribed to many conditions, so that is where the EMG pattern and specific patterns of weakness as were evaluated in your exams, would come into play.

Best,
Laurie
 

RogerC53

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The decision was based on my emg, Progression of The weakness and failure of muscles. Breathing and swallowing test and the standard neuro test of overactive reflexes etc. He also spent a great deal of time ruling out auto immune diseases. My emg showed lower and upper problems. I will look for my copy.

My symptoms are progressing and I find myself losing a degree of functions monthly. Most symptoms started on my left leg and hand and then moved to my right side and gradually moving up my body. Voice is starting to fail me and becoming weak. Head and neck are gettin heavy and muscles progressing in weakness. I use a Bipap machine to help my breathing.
My wife sees my progression and is convinced I am in denial of ALS. I just don’t want this disease.
I have only had 2 times when my dexterity improved over the last 5 months and is was for very short period of a day. I don’t have sharp or prickly pain, just pain like over use or strained. I really feel it in my arms and legs mostly.
thanks for the time and effort to respond.
 

KarenNWendyn

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Sounds like ALS. Sorry. I don’t blame you for not wanting it.
An abnormal EMG only shows lower motor neuron findings. Upper is seen on exam — spasticity, reflexes, clonus.
Denial can help you keep going. A certain amount is ok. The fact you’re here means you’re not in complete denial.
 

Jimi

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Would like nothing more than to say that what you described sounds like something different, but based on my experience it fits ALS. Sore muscles were common for me as I spent two years working as a machinist while dealing with symptoms and awaiting dx. I believe that as you loose communication to parts of the muscle the remaining functioning parts of the muscle can get a real workout and get sore. There were days when my hands felt better than others, but as others have pointed out, what is more telling is the trend over time. Regarding "My arms and legs feel like they are cast iron and getting heavy" this would describe the odd sensation of getting weak before your brain has adjusted to your new normal. I never realized how heavy my limbs were just dealing with little old gravity. Wish you all the best
 

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If you have a lot of spasticity then the increased muscle tension can be painful.
 
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