What was everyone's first symptoms? I'm worried my mom has MND

[abyrne76]

Hello,
I just stumbled onto this website after a google search and glad I found it.
My mom is 71 years old and generally healthy (hypertension and high cholesterol) and lives in Florida. I was wondering what everyone's first symptoms were for ALS?
Since November, she has been having right lower leg weakness and now has foot drop. She also complains that her speech feels forced and "coming out of her nose" vs her mouth and that her throat feels "wide open" , therefore making her really think about drinking and making sure it doesn't do "down the wrong pipe" She also feels that her left leg is getting weaker and that her upper arms are "weak".
Her MRI brain, C spine are normal besides a mengingoma that she has had that has not grown in size in 2 years. Her MRI L spine is tomorrow.

Her EMG showed "There is electrophysiologic evidence of active denervation on the bilateral L5-S1 innervated muscles without much denervation on the paraspinal muscles. This can be consistent with motor neuron disease and/or chronic radiculopathies. There is no evidence of right peroneal mononeuropathy with entrapment at the fibular head. There is no evidence of a distal polyneuropathy."

She is very upset and scared that it could be ALS. I live in PA and flying down there next week for a follow up appt with her neurologist. Did many of you also get a second opinion after you were diagnosed? I live near PENN hospital system and was going to get her a second opinion with the neuromuscular clinic.

 

[Nikki J]

You put as interest dxed MND but neither you nor your mother have a current diagnosis according to your post so your post was moved here

the lumbar mri is an important test here though even if it is normal doesn’t mean it is definitely ALS. Her emg from what you have said does that seem diagnostic.

after you have the test results and follow up your mother can decide what to do next. If ALS is on the table she should see a neuromuscular specialist for a definite diagnosis.

generally first symptoms are weakness but weakness is hardly unique to ALS

it is hard to wait for tests but for now there is still hope

please let us know

 

[affected]

I'm sorry but we don't discuss in this section what our first symptoms were as it only makes the anxious believe they suddenly develop them. I hope your mum gets and answer quickly and it is something else.

 

[abyrne76]

Oh ok! thank you

 

[lgelb]

Yes, we do recommend a second opinion at a major center such as Penn, Drexel or Temple. But if she lives in Florida, it might be more practical to get a second opinion at a clinic she might want to use as home base should an ALS diagnosis stand. Here is a map.

Best,
Laurie

 

[KimT]

If she lives in Lakeland, University of South Florida has good neuromuscular docs. Otherwise, Mayo in Jax.