Is this really ALS?

[Mamalena]

Hi and thanks for letting me join this forum.
Let me start off by saying that I am not in denial, I am just following a gut feeling and want to see if anyone would do the same thing.

My dad (67) was diagnosed with ALS recently.
It started with him having trouble to button up a shirt and sign cheques about a year ago, and the muscle between thumb and index finger disappearing shortly after. Then he went to a Neurologist.

10 years ago, he had a herniated disc, was in pain for several weeks and never returned to his old self. He started breathing heavier when going up the stairs and he has been getting weaker ever since.

Now, he is so weak, he doesn’t want to get up in the morning. My mom takes him to the office and helps him with his work. She helps him shave, etc because he is so exhausted all the time. His hands start shaking when he tries to brush his teeth. His breathing is very laboured. Everything is emotionally and psychologically draining for him, even the slightest problem with his computer, for example.

His muscles in his upper body are receding, but so far he can move everything.
His neck often hurts and he has to rest his head.
Some days his speech sounds weak, he has to swallow a lot. Other days, he sounds strong and normal.

He went to an ALS clinic and they did all kinds of tests and diagnosed him with ALS.
LP clear, MRI clear. EMG shows nothing in his legs. Lung at 58%, not declined in the past 3 months.
A blood test came back positive for Lyme, but only IgG, not IgM, so nobody is taking any action.

He uses a Bipap at night, but it hasn’t made a difference regarding the tiredness.

My gut is telling me to keep looking, maybe it is Lyme disease. I know there is no typical ALS, but it just sounds so different from others who have it.
Does anyone know of cases that sound similar?

He said last week that he thinks this is the last phase and he doesn’t have much time left.
I understand that he feels so bad that it seems that way. But then I’m thinking: his lungs are still functioning, his heart is perfect, can you die from exhaustion and weakness?

 

[Atsugi]

Well, that's strange. No, this doesn't seem like ALS to me, especially when you wrote that "EMG shows nothing in his legs." I wonder what they used to diagnose him. I wonder if the doctor who diagnosed him is an ALS specialist.

On the other hand, he and his wife have this problem, not you. So be careful not to "take over" or to interfere in their marriage.

 

[KarenNWendyn]

Denial is common and even healthy if it causes you to ask questions. When in doubt, seek a second opinion from a qualified neuromuscular specialist.

I agree that the normal EMG in the legs seems odd for ALS. Was the EMG abnormal and suggestive in the bulbar area, thoracic area and arms? If so, he could still have ALS, especially if there are documented upper and lower motor neuron findings in these areas. ALS is an evolving condition, so not all the manifestations come on at once. However, it is my understanding that EMG abnormalities come on early, so normal findings in the legs would be a good reason to get a second opinion. EMG interpretions are also highly operator-dependent, so another physician might get different readings.

 

[laurel]

Mamalena, my neighbour who died, presented with many symptoms of what you describe and he was diagnosed with Lambert-Eaton Myasthenic Syndrome. I don't recall all the details, but I remember him having the weakness, laboured breathing, and in the end had trouble holding up his head. They went through a huge list of possible diagnosis and he was diagnosed with Lambert-Eaton shortly before he died. Thinking of you and your dad. Best of luck with figuring things out.