Help with my mother's diagnosis

[ducksoup]

Hi,

Would just like to ask this community's help with understanding the difference between ALS and MND.

My mother was diagnosed last year with MND. Her diagnosis was a long process, starting in january 2015 with a dropped foot that stayed that way for the better part of 2015. Her first neuro diagnosed a pinched nerve (an MRI showed a herniated disc) but when the weakness in her foot progressed he then gave a microstroke as his DX. By early 2016, my mother started to loose the function of her other leg. Two months later, her left and right arm started to slightly weaken. At this point, the doctor's diagnosis was Parkinsonism.

It was sometime in September 2016 when my mother's condition hastened. By this time, my mother now had a difficult time speaking. She still had the use of her right hand and operate an ipad and phone and if asked can slightly lift both of her legs and left hand.

We visited a third neuro who noticed fasics on her tongue. It was at this point that she was diagnosed with MND. We then consulted two other neurologists just to get a second and even third opinion. Both gave the same diagnosis.

I know that there are several types of MNDs, ALS being one of them. Given her progression, I would like to know which one my mother has. The third doctor's diagnosis mentions MND, but it never really specifies which one. There was mention of the word ALS verbally during one of our visits but this was never really mentioned in his official report hence my confusion.

Two years later, my mother's appetite is still healthy. She still goes out but in a wheel chair. She is barely intelligible when she speaks but has the use of her right hand. Her left hand, and both legs barely move when asked but they still move. She, so far, has no problems with breathing but we noticed that she now snores loudly when she sleeps. We also noticed that she will sometimes laugh for no reason at all.

That's it. Would now like to ask anyone here for help in specifying what type my mother has. Your thoughts would be highly valued.

 

[lgelb]

From what you describe, your mother meets the clinical criteria for ALS, and the progression timeline fits as well. I do not know if Nuedexta is available in the Phillipines, but it is a drug that might help the inappropriate laughter (part of what is called emotional lability), which is fairly common in this disease.

Best,
Laurie

 

[ducksoup]

From what you describe, your mother meets the clinical criteria for ALS, and the progression timeline fits as well. I do not know if Nuedexta is available in the Phillipines, but it is a drug that might help the inappropriate laughter (part of what is called emotional lability), which is fairly common in this disease.

Best,
Laurie

Thanks, again, Laurie for the really quick reply. I'll check if that is available here.

Is there also a way for me to private message you regarding my mother's prognosis. Don't want to sound like an alarmist here on the forum. Hope you don't mind it.

 

[soonerwife]

Welcome ducksoup! Sorry to hear about your moms dx. You have found a wonderful place for info and support.

 

[lgelb]

You will be able to PM people when you have been here longer. Meanwhile, feel free to post any questions here.

 

[ducksoup]

Thanks, Laurie. I just wanted to ask what stage my mother is in. Don't know if that's a valid question. You mentioned a timeline so it made me think about stages or phases of the illness.

 

[ducksoup]

Thanks, soonerwife.

 

[lgelb]

DS, the "staging" thing doesn't apply in ALS as it does cancer or lung disease. There is no set pattern of what goes wrong when, except that most people ultimately lose speech, swallowing, mobility and have serious breathing problems. Progression often seems fast at the beginning, then might slow down, then speed up later. But that is not always true.

I would make sure she has "pulmonary function testing" soon to see if her breathing needs a machine called a BiPAP to help support it. This machine helps maintain quality and quantity of life for longer once breathing problems begin. Also, if she does not have a hospital bed, that might help her be more comfortable at night because many people with ALS do better with their head raised when they sleep, and often their feet too, though often at less of an angle.

Best,
Laurie

 

[ducksoup]

DS, the "staging" thing doesn't apply in ALS as it does cancer or lung disease. There is no set pattern of what goes wrong when, except that most people ultimately lose speech, swallowing, mobility and have serious breathing problems. Progression often seems fast at the beginning, then might slow down, then speed up later. But that is not always true.

I would make sure she has "pulmonary function testing" soon to see if her breathing needs a machine called a BiPAP to help support it. This machine helps maintain quality and quantity of life for longer once breathing problems begin. Also, if she does not have a hospital bed, that might help her be more comfortable at night because many people with ALS do better with their head raised when they sleep, and often their feet too, though often at less of an angle.

Best,
Laurie

Thanks, laurie. This is very helpful. She does have a hospital bed that allows her to raise her head at an angle of her choosing. However, the doctor has yet to request for "pulmonary function testing". Should I talk to the doctor about this? Or should I just wait for him to order it?

 

[lgelb]

Ask. That's pretty much the guiding rule in ALS, unfortunately.

 

[ducksoup]

Hi everyone, hope you can shed some light on one of the tests my mom recently took.

Her neuro ordered an ESR-Westergren test. The reference range was 0-30 and my mom's value were 33.

What is test for? And how is this important in relation to ALS?

 

[lgelb]

The sed rate is a non-specific measure of inflammation. It doesn't diagnose or rule out anything on its own. I would not worry.