Concerned about my mother's prognosis

[SpeciallyDude]

Im sorry if my english isnt too good but recently, my mother has gotten a checkup from a neurologist regarding the weakness from both her legs. The neuro gave her a prognosis that it might be MND/ALS, they requested she should get a blood test and an MRI first to check if it's something else.

Earlier this year, my mother got an EMG for her left foot drop and weakness, she would trip alot and it would easily fatigue. The results said she had Peripheral Neuropathy on her left leg and she would undergo Physical Therapy, it did nothing.

As of recent, she consistently gets cramps on her left leg and her right leg is also starting to become weaker. She mostly feels the twitches on her thighs and she also has brought up that she sometimes feel nerve and muscle aches. I dont know if its connected but she also consistently gets dizzy every morning and would take awhile to get up.

Im sorry if what I wrote seems like a mess, I'm just very anxious right now and alot of questions are running through my head. Especially with like, can ALS be misdiagnosed as Peripheral Neuropathy or how she twitches less if she eats less. Im just here to ask for atleast assurance that she points away from the prognosis.

 

[lgelb]

Sorry to hear about your mom. It can be hard to know if things are connected. Dizziness in the morning would usually not be associated with ALS unless there were untreated breathing problems, and usually that would not be the case early on, if ALS started in the limbs.

Are you meaning to say that her twitches get worse if she eats more? No, that is not an ALS thing, either.

Usually an EMG that only showed peripheral neuropathy does not become an ALS diagnosis. Whatever the blood tests and MRI show, I would get a second opinion at a different hospital. The Philippine General Hospital (PGH) appears to be the major MND centre where you are.

 

[SpeciallyDude]

Her blood tests were all normal except for increased CK and were waiting for her MRI results this Thursday, its a constant struggle here in this Country since neurologists are rare and people who specialize in ALS are even rarer, there is also no support or organization for people who get this kind of diseases.

 

[lgelb]

So diabetes and thyroid issues were ruled out?

Two PH doctors with papers on ALS are:

Dr. MB Prado, Department of Physiology, College of Medicine, University of the Philippines Manila, [email protected]

Dr. KJB Adiao, Department of Internal Medicine, Medical Center Manila

 

[SpeciallyDude]

So the MRI hasnt came in yet and idk if theres a delay but I randomly find out that my Mom actually regained control of her toes in her left foot. Earlier this year she couldnt move them at all now she can point them up and down, this is good right?

 

[KimT]

With ALS, once you lose function it isn't regained. If her condition is something other than ALS, there are many conditions that flluctuate.

I would look for a second opinion.

 

[SpeciallyDude]

So I got a confirmation that the MRI results were indeed delayed due to problems with the MRI Printing. I've been thinking lately, what differentiates a peripheral neuropathy EMG vs an ALS EMG. I have been searching for quite awhile and I still havent found a comparison between them, I'm just skeptical about her old EMG that said it was Peripheral Neuropathy.

 

[Nikki J]

Peripheral neuropathy usually has extensive abnormalities in the ncs while ALS has extensive abnormalities in a particular pattern in the emg. It is certainly possible to have both or to have one and then develop the other as a separate disease but the electrophysiologic findings are very different

 

[SpeciallyDude]

Well in her EMG months ago they concluded that it was a peronneal nerve injury so thats why she has neuropathy, her NCS was normal tho. Im just staying positive on the idea that yeah it really was just PN on her emg

I also asked more about her foot drop and she said it hasnt really gotten any weaker or stronger but she did regain control and muscle movement of her toes, i could also see that she can somewhat do a dorsiflexion compared to before.

Sorry If I'm being annoying about this we've just been anxious lately.

 

[lgelb]

Regaining movement that she had lost is certainly not typical of ALS, and a peroneal nerve injury could certainly affect foot and ankle movement. So that is strong evidence against ALS.

As mentioned above, when you talk about dizziness and issues affected by eating, those usually relate more to systemic conditions that an internist can help with.

 

[SpeciallyDude]

After having a talk with my mother, she talks about worsening vertigo lately. Her right foot also seems weaker as she cant point them up much now as she used to.
But she also said that she can walk longer distances now without feeling any pain in both her legs and yeah she has control over her left toes compared to earlier this year.

Im just looking for a bit of an assurance right now as we're waiting for a Neuro check-up.

Ive found her old EMG Findings and this is what it said

NCV & EMG Findings:

 

[SpeciallyDude]

All nerve conduction studies were within normal limits

All F Wave latencies were within normal limits.

H-reflex studies indicate that the Right tibial H-reflex has no response. All remaining H Reflex latencies were within normal limits.
Needle evaluation of the Left extensor hallucis longus muscle showed increased motor unit amplitude, increased motor unit duration, and moderately decreased interference pattern. The left anterior tibialis muscle showed slightly increased spontaneous activity, increased motor unit amplitude, and decreased interference pattern. All remaining muscles showed no evidence

Impression:
Peripheral Neuropathy, Perroneal Nerve, Motor Incomplete

 

[lgelb]

As we suspected, this report does not increase our concern about ALS but suggests a limited kind of nerve damage, as stated, that would not spread all over the body.

So even more strongly, I would say that your mother should be under the care of a good internist who can help find out what the dizziness and eating issues mean. If she got dizzy and fell down, that could do much more damage than anything in the report suggests is wrong.

Did you contact either of the two doctors listed above?