Mom has been wheelchair bound for 2 years - suspect misdiagnosis

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enidoreilley

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Hello,

My mother was diagnosed with Alzheimers 5 years ago when she started moving more slowly and making mistakes at her job. She was 62 at the time. They asked that she retire and we all began preparing for living with and caring for someone with early onset Alzheimers.

Thing is, the disease never progressed like Alzheimers. I am fully aware that Alz is as unpredictable as a disease comes and that atypical presentations are a thing. But it was her mobility that was affected. She went from being a reasonably fit 62 year old to be wheelchair bound with no strength at all to stand within about 4 years. It happened so quickly. She went from cane to walker to wheelchair in such rapid succession that family members who didn't see her for a few months would be shocked to see how her disability progressed. She struggles to speak and chokes frequently while eating. She was recently diagnosed with COPD. This is surprising, too, because she has never smoked, and was an avid hiker. Her memory isn't great, but it's not bad, either. When I see her, she knows who I am, asks about my son and my job, etc.

We have taken her for second opinions a couple times. She also has 3 benign brain tumors, which the Drs have assured us repeatedly do not have any impact on her condition. We also suspected undiagnosed stroke - again, this was not the case. I don't believe she has ever been checked for ALS. Full disclosure, I am recovering from debilitating hypochondria and was unhealthily fixated on this horrible illness, so this is difficult for me to even arrive at.

I am just wondering if anyone has any input on this. Does this sound like it could be an MND? Is there a particular specialty I should approach for a second (4th) opinion on my mom? I am getting pressure from her siblings to keep seeking another answer, too.

Thank you so much and god bless

Enid
 

Nikki J

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What kind of doctors has she already seen? What testing was done to make the AD diagnosis? It sounds like she had a brain MRI what did it show besides the benign tumors? Did she have full neurocognitive testing? That would involve several hours with a PhD specialist not the screening type that is done during a regular neuro visit Given her age did she have genetic testing for early AD genetic markers?
 

enidoreilley

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Thanks for responding!
Ultimately her neurologist made the diagnosis after a long suspicion of her PCP.

The diagnosis came after 2 MRIs w/ contrast and a PET scan. Her MRIs were normal except for the tumors. The only neurocognitive testing that I know she had was in the office with her doctor, and just the basic kind, 10 minute kind. She had no genetic testing.

For the second opinions, she saw a neuro surgeon (we asked him about the tumors) and a vascular neurologist (we asked him about a possible stroke).

Honestly MND didn't even cross my mind until my sister asked me about it. My parents have a lot of financial difficulty and are on Medicaid. But her 9 siblings are very concerned and skeptical of her diagnosis and I'm sure they could help us pay if we have to go out of pocket to see someone out of network. I just want to make sure we go for the right specialty.
 

Nikki J

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Your mother should have medicare medicaid by now. Is she in an hmo ?

I would take her to a university medical center -like UPenn or Temple to see a general neurologist. I do think it warrants a second look given what you say and her age. I don’t think you should go right to neuromuscular. Some of the dementias could well act like this. I hope you can do this not out of pocket.
 

Clearwater AL

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Enidoreilly, I read your first Thread from March 8th 2018.

Be careful your previous bout of hypochondria isn’t influencing
the concern of your mother’s issues.

As you wrote…
“I am recovering from debilitating hypochondria and was unhealthily
fixated on this horrible illness, so this is difficult for me to even arrive at.”

Yet you commented…
“Honestly MND didn't even cross my mind.” ??

Finally…
“Is there a particular specialty I should approach for a second (4th) opinion
on my mom?”

Four opinions? You may be over extending your mother taking her to
numerous doctors appointments, more testing, follow up appointments

I am familiar with Alzheimers… most of the symptoms you describe are
common with people who fall into accelerated Alzheimers. Her diagnosis.

Don’t get her into "possibly" your chase for ALS… again. Work with one
doctor who specializes in Alzheimers. He/she is educated enough to be
suspicious if the Alzheimers is being complicated with ALS.

Go back with the first Neurologist who diagnosed her with Alzheimers.
 
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