Possible ALS

[me3845]

I have been experiencing pain in my left should. Feels like I have just slept on it wrong. This started November of 2022. Then arm has atrophy and I can’t lift weight above 5-10lbs without help. I have full motor range, fairly good grip strength. Also the atrophy has entered the top part of pec next to arm.

I don’t have pain when lifting any weight just weak. The rest of my body hasn’t been experiencing any discomfort, until about 2 weeks ago my right shoulder started aching like I’ve slept on it wrong.

I just had emg, blood work done & MRI on august 31st.

I do have muscle twitching but have had tremors must of my life.

So my question is are these the early symptoms or just my mind ? Doctor ordered all these different test. Told me if they all come back negative I have ALS.

So just wondering the pain type feeling and the progression of weekends and atrophy.

Also I’m 52.

 

[Nikki J]

A few thoughts. Your right shoulder has presumably been compensating for your left plus the left is likely throwing things out of alignment

There is a lot of space between all in your mind and ALS

My first thought would be Parsonage Turner syndrome which can be tricky to diagnose unless they are specifically looking for it.

It is definitely not true that if all your tests are negative it is ALS . You state you had an emg. If that is normal then it isn’t ALS. If it is abnormal it could be abnormal in many ways depending on what is wrong. But ALS is not just a diagnosis of exclusion it requires specific findings on emg and clinical exam. What kind of doctor said this?

 

[lgelb]

There are several syndromes that affect one shoulder, that are not ALS, that go under different names. These include localized motor neuropathies, brachial neuritis/neuralgic amyotrophy, Parsonage-Turner, and Hirayama disease. Frozen shoulder is another.

I would certainly get a second opinion, whatever comes of the tests.

 

[me3845]

I went to a neurologist for the emg and results. Originally the test was just for my left arm. Then based on my results he tested my left leg, lower back and neck. He went to these other body parts because of the information he received during emg test.

Then when we met to talk about results, he went in to the different possibilities of what it could be but when he mentioned it could be ALS it just kinda smacked me in the face and I lost focus on everything else he was saying. That’s why he ordered so many other tests.

Then of course every little thing that feels different or I read about I get that symptom or feeling.

 

[Nikki J]

So your doctor said that after an abnormal emg? That is different. You need to know what the emg showed and if AlS is on the table you need to see an ALS specialist. For your location that is Wash U which has excellent neuromuscular doctors

 

[lgelb]

You have a right to the report, which you can de-identify and post here if you'd like comments on it.

 

[me3845]

They took blood work and they had me fedex to wash u. The doctor was reluctant to give me a lot of information from the emg and I was just so caught off guard with what he thinks it is, I unfortunately just had a brain freeze with questions to ask him. I just figured once I had all my test results back to take them and get a 2nd opinion on the results. We have KU Med which is supposed to have a great facility and doctors for ALS, if that’s what it comes back with.

 

[Nikki J]

Mass general sends two types of tests to Wash U too. One is a panel looking for mimics like MMN and the other is fairly new test called nfl. That doesn’t diagnose anything but it is a measure of neurodegeneration With all respect to KUMC I would be going to Wash U if I lived there and was looking for ALS care They are at the forefront of research. Just like I go to MGH even though Beth Israel in Boston has excellent doctors too

 

[me3845]

I also wanna say thanks for the reply’s and information. Wash U is 4 hours from me and have friends that live there also, so possibly going there is always an option.

 

[Nikki J]

Sorry! I know WU is in St Louis not KC but my brain wasn’t processing. Probably because I have friend in KC who did choose Wash U. Four hours isn’t trivial but if you are diagnosed it is definitely a place for a second opinion. It may be that you would choose it or have a hybrid clinic experience. Both my sister and a friend chose to do this from other states for Mass general though both ultimately left the clinic closer to home and only did MGH. Televisits could be used too if you became established but KU does have trials toowhich may be important to you and was what I was thinking of mostly