Husband sick but no answers

[AliCP]

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My husband (46) is having weakness, cognitive problems, balance problems, and some other weird symptoms. These have been ongoing for about a year but he has made a significant decline in the last six months. In June he was sent home from work because he had hand weakness that prevented him from working and was stumbling. He went to his general practitioner who did a cervical mri and saw a herniated disk in his neck. He saw a neurosurgeon who referred him for an MRI of his brain and an EMG. The brain MRI was normal and the EMG was abnormal. The neurosurgeon recommended surgery on the herniated disk but also referred him to a neurologist because, in his opinion, the EMG was “jumpy” and the cervical MRI did not explain the severity of the hand weakness. He said that he was concerned about a MND.

My husband had the cervical spine surgery and got an appointment with a neurologist that was two months away. In the meantime, my friend was able to get him an appointment with the VA in the ALS clinic. So he saw the VA neurologist who repeated the EMG and said it looked “focal”.

We have since seen him a handful of times and he has ordered every test imaginable. So far they have ruled out Myasthenia Gravis, LEMS, & Lyme disease, did a PET scan for dementia/ Parkinson’s dementia, all bloodwork is normal (thyroid, B12, everything.). Two weeks ago he repeated the cervical MRI and it was perfectly normal. But the weakness, especially in his hand, is much worse and now he is having some intermittent neuropathy in his feet. He’s also had some weird stomach stuff in the last few weeks but that could be anxiety. But he keeps describing a weird sensation in his stomach muscles. He doesn’t have any pain except the little bit of neuropathy in his feet. His cognitive decline is very worrisome.

I said all of that to say that we go on Thursday to do another EMG to see if there is any change. My question for you guys is what are we missing? What do we need to be asking? And how long did it take any of you to get a diagnosis or some sort of straight answer?

 

[lgelb]

I'm sorry that his issues are persisting/worsening. Can you post the last EMG with names concealed?

What cognitive changes and balance issues have you seen?

Is the weakness in one or both hands, and has that changed over time?


Best,
Laurie

 

[AliCP]

Thanks, Laurie.

I don’t have a copy of the 2nd EMG. I know I can get one but I don’t have it.

He is very forgetful. Beyond the normal scope of forgetfulness. He can no longer handle finances, which he’s always done. He says he has a hard time getting words to process from his brain out of his mouth. He did a neuropsychological which indicated ADHD, he’s never had adhd. He’s always been very meticulous. He can’t complete tasks with multiple steps.

His can not walk a straight line. He doesn’t have any dizziness at all. He stumbles on his own feet a lot. He has some trouble with stairs.

His right hand strength was at 50% and his left hand was at 75% strength the last time it was tested. His right hand is noticeably worse. His index finger on his right hand is drawn toward his palm and he can not move it up. He’s been doing physical and occupational therapy but the weakness has progressed. I noticed last month that his hand kind of flops when he claps. The physical therapist thinks there is weakness in the right leg causing some of the balance problems.

It’s very overwhelming.