Could there be a mistake in my DX?

[Malori]

I was diagnosed with ALS on January 10. This was after having an EMG and NCS, bloodwork and MRI of my brain and neck. At present my left arm and hand are almost useless. I have noticed fasciculations in other parts of my body but no weakness as of yet. The thing I’m wondering about is that my shoulder hurts so badly at times I wonder if I could have problems with my rotator cuff that would cause my arm and hand not to work. I can post the results of my EMG or bloodwork if that would be helpful and others could chime in with their opinion if my diagnosis could’ve been a mistake.

 

[lgelb]

I'm sorry to hear of your dx. Were you diagnosed at an academic medical center? We always advise a second opinion, especially if not.

Sure, post whatever you like, with your name redacted, of course. However, a rotator cuff injury would not show an ALS-like pattern on EMG.

It is possible that because of lost muscle, your shoulder joint is subluxated or heading that direction, which can cause pain. It's sort of like a dislocation.

As you would for a shoulder injury anyway, I would make sure when you try to use your arm or hand, that the shoulder is not being pulled on, away from the socket.

And you can certainly make an appointment with an orthopedic surgeon who can assess the shoulder specifically to see if there is anything to be done for it.

 

[Malori]

Thank you. My dx was at Erlanger in Chattanooga. Here is a picture of notes on my EMG. There is also pictures in graphical form if that is needed.

EMG Summary Table
	Spontaneous	MUAP	Recruitment	Comments
Muscle	IA	Fib	PSW	Fasc	Amp	Dur.	Stability	Complexity	Pattern	Comments
L. Deltoid	Increased	1+	1+	None	5-10mV	Mod. long	Mildly unstable	Mildly complex	Mildly reduced	None
L. Biceps brachii	Increased	2+	2+	None	5-10mV	Mod. long	Mildly unstable	Mod complex	Mod reduced	None
L. Triceps brachii	Increased	1+	1+	1+	10-20mV	Mildly long	Mildly unstable	Mildly complex	Mildly reduced	None
L. Pronator teres	Increased	2+	2+	1+	5-10mV	Mildly long	Mildly unstable	Mildly complex	Mod reduced	None
L. First dorsal interosseous	Increased	2+	2+	None	10-20mV	Mod. long	Mod. unstable	Mod complex	Markedly reduced	None
L. C6 paraspinal	Normal	None	None	None						None
L. C7 paraspinal	Increased	None	1+	1+						None
L. Genioglossus	Normal	None	None	None	Normal	Normal	Stable	Simple	Normal	None
L. T6 paraspinal	Normal	None	None	None						None
L. T8 paraspinal	Normal	None	None	1+						None
L. Tibialis anterior	Normal	None	None	None	Normal	Normal	Stable	Simple	Normal	None
L. Gastrocnemius (Medial head)	Normal	None	None	None	Normal	Normal	Stable	Simple	Normal	None
L. Vastus lateralis	Normal	None	None	None	Normal	Normal	Stable	Simple	Normal	None

 

[Nikki J]

Thanks you for sharing. Were you diagnosed by Dr Shugars or Dr Alpers? They are both highly qualified. I would still seek a confirming opinion but more for peace of mind and another opinion on treatment approach. The emg doesn’t make me doubt them. I expect they did the usual labs and imaging?

 

[kljack16]

Hi Malori,

I’m so sorry to welcome you to this site, but I will say it and its members have provided a lot of comfort and advice as my husband and I went on this journey with ALS.

My husband’s first symptoms were severe shoulder/neck pain which progressed to weakness in his arm. I have 2 friends that had similar symptoms and both of them had compressed vertebrae that were fixed with surgery and PT; so I was convinced that was his issue as well.

I waited at each new doctor, after the first ALS diagnosis, to be told it was a mistake, that ALS was NOT a correct diagnosis. It was too much to accept. We went to 2 general neurologists and 2 world renowned ALS experts (Johns Hopkins and Methodist in Houston). However, the “correction” never came.

While I wish for you that you find it is an incorrect diagnosis, please follow the advice from the long term members here. They are so well informed and knowledgeable about this disease. A second (or third) opinion from ALS experts is never a bad thing and it might help you come to terms with it (or it might prove that you are right and it’s the wrong diagnosis).

You and your family will be in my prayers.

 

[Malori]

Thank you so much!