More Questions

[dldred]

Hi
I am finally getting used to the idea of my mom being diagnosed with mnd. I have a few questions and I can't really seem to find answers on other websites. I know I can get more help here than I can anywhere else. My mother was diagnosed last week and has not been to any of her appointments yet such as swallowing test, muscle test, pulmonary you know blah blah blah. Anyway I would like someones opinion about what they think about the onset and if it seems to be upper or lower motor neuron. She started with foot drop about 2-3 years ago on her left side. She has had slurred speech now for about a year. Some mild swallowing problems. Her right foot is a little weak now, not as much as the left. She can walk with a cane. She has no muscle weakness in her arms. Her breathing is good, she walks on the treadmill every morning and is not short of breath after. No muscle loss yet. She has bigger muscles in her arms than I do.
She does not seem to have any muscle loss in her legs, just weakness. I really appreciate everyones help here, you have been so helpful.

Thank you for keeping me sane.
Dana

 

[thelma313]

Hi Dana,

I am definitely no expert but I would say it sounds like your Mom is progressing quite slowly which is good. I can tell you my Dad started with slurred speech in February 2007 and 6 months later, in August he was diagnosed with Bulbar onset ALS. By the time he was diagnosed his speech had deteriorated significantly and he now has foot drop and extensive muscle loss in his legs and most recently his hands too. Also he has a feeding tube and a bipap at night.

The best advice I can give you (which I learned here) is to tell your mom she should not lose any weight. The more weight you can keep on her the better her chances of slowing the progression. The brain's number one nutrient is fat so tell her to keep it on!

Feel free to ask anything. We are here for you, Dana so keep the faith and stay strong!

 

[Zaphoon]

Dana,

The lower motor neuron problems cause muscles to become weak and atrophy. Slurred speech is the result of the tongue becoming weakened by lower motor neuron death. The upper motor neuron problems will cause stiffness, cramping and hyper reflexes and things like Babinski sign.

If your mom has been diagnosed with ALS, she has both UMN and LMN activity.

Zaphoon

 

[olly]

dana.
welcome to the forum.
no significant weakness or any atrophy after 2-3yrs is a good sign.
does she have hyper reflexes,clonus,spasms,stiffness?
these indicate umn/pls mnd were you do get weakness from spasms and can have footdrop even atrophy as in my case after many years.
after further testing with emg your neuro will have more of an idea which mnd she has.

 

[dldred]

Hi and thanks for your input and advice. She has some cramping, not a lot in her legs some spasms in her back, no pain at all ahe hasn't mentioned any other spasms. She seems to be starting with hyper reflexes, my dad said her reflexes were really good at the doctors, which leads me to believe they are a bit hyper. Her gag relex is sensitive.
I am hoping this is a very slow progression. I thank you all for helping me with all of these questions. I don't know what I would do without you. You are now part of my family.

Thanks
Dana

 

[Marose]

When and how do you notice the foot drop? My mother is not the best at relaying her symptoms unless I ask the right questions.

 

[dldred]

My mom started with the footdrop about 2-3 years ago. When she thinks back now she says it is probably closer to 3. Then about a year ago she started with the speech problems. She went to the doctor and had a MRI, the MRI showed she had a stroke. That is what we had thought for a year, but her speech was getting worse so she was sent to a neuro. The neuro told her she had MND, but now I find out several other tests should have been done before giving that diagnosis. So now we are waiting on other tests and looking for another neuro.

Dana

 

[Marose]

My mom started with the footdrop about 2-3 years ago. When she thinks back now she says it is probably closer to 3. Then about a year ago she started with the speech problems. She went to the doctor and had a MRI, the MRI showed she had a stroke. That is what we had thought for a year, but her speech was getting worse so she was sent to a neuro. The neuro told her she had MND, but now I find out several other tests should have been done before giving that diagnosis. So now we are waiting on other tests and looking for another neuro.

Dana

My mom has speech and swallowing problems but no footdrop. We were only given one test as well. The ALS society helped us find a neuro that specializes in ALS in our area. I'm still not sure what the footdrop is that I keep reading about.

 

[joelc]

Footdrop happens when the muscles in your foot can no longer hold your toes up so they point downwards and you trip over them.