First time poster..and my dad might have ALS

[bssofro]

I have been lurking in the shadows trying to figure out and digest all the information regarding ALS and MG. First of all, I want to say hello to everyone and introduce myself.

My father has the following symptoms in this order

-trouble walking (never really recovered well from a total hip done 1.5 years ago)

-Slurred speech and wrong word choice plus memory issues

-His speech went from a very nasaly tone, to now a very raspy tone. It is faint and soft.

-Weakness in both legs and pain in his left shoulder.

-Fasciculations in arms, calves, shoulders, tongue

He has had both the anti-body test ad an EMG test. He is borderline on the anti-body test but did test POSITIVE on the EMG. We are testing is again in 6 days.

We were hoping it was MG over ALS

He was put on Mestinon to see if he would respond with a swallowing issue he said he was having. Well, after two doses (60mg each dose) and while taking (starting Tramadol -given to him for his shoulder pain, at the same time) he wound up i the ER with heavy sweating and major fasiculations. The neuro took him off BOTH drugs. 5 days later he complained of a "clogged" throat. We called up our Neuro and he said put him on 60mg then 30mg 8 hours later and then another 30mg 8 hours later from that.

My dad is also suffering from a mild form of dementia. So getting accurate responses from him can prove to be challenging.

So my questions are as follows:
And thank you for taking the time to respond:

1) Is anyone with ALS, taking MESTINON ? If so what is your dosage?

2) People who take MESTINON do you feel better or worse? Does it make you more tired if you were not taking it? All the research I have read, tells me that it is very difficult to pinpoint the exact dosage. Too little or too much give the same side effects.

Any help would be great.

My dad is also taking Nemanda, MESTINON, and I have him taking 2000mg of cinnamon according to the anecdotal evidence.


HAPPY 4th of July.

God Bless the United States of America.

I appreciate any replies as we fight this terrible disease.

thank you

 

[rose]

Hi, & welcome to the forum.

I thought I already replied to this, but the post never showed up, so here it is again. If it ends up being a duplicate, sorry for the confusion.

I took Mestinon for a short while. It made me feel worse, it also increased my fasciculations and made my speech worse.

I too have heard that some PALS take it though, and perhaps if you visited the Patients Like Me Forum, where a lot of this info is tracked, you could learn more.

To my knowledge there are no currently active members on this forum, with a diagnosed of ALS who take it.

We did have a member, by the name of Shatzie, who originally had a diagnosed of bulbar onset of ALS, and eventually it was found she had MG instead, and this was by route of trying the mestinon, and seeing a huge improvement. (diagnosed change not solely due to the mestinon, but this was part of how it came about)

Has your father had a repetitive stimulation NCV test? This test can be used to help distinguish between the two diseases.

good luck to you, your dad and the rest of your family.

 

[mally]

Hi
First time poster here and don't really know how to use the site to be honest but here goes. I'm recently diagnosed and have a high antibody test for MG. Ive been taking mestinon for about a week-sometimes it seems to help and sometimes not. Is anyone else like me? My neurologist says that I have a typical lower motor neuron disease in that I have slight denervation in many muscles in my body. He doesn't seem to know what to make of it. Any suggestions anybody?

 

[bssofro]

Hi, & welcome to the forum.

I thought I already replied to this, but the post never showed up, so here it is again. If it ends up being a duplicate, sorry for the confusion.

I took Mestinon for a short while. It made me feel worse, it also increased my fasciculations and made my speech worse.

I too have heard that some PALS take it though, and perhaps if you visited the Patients Like Me Forum, where a lot of this info is tracked, you could learn more.

To my knowledge there are no currently active members on this forum, with a diagnosed of ALS who take it.

We did have a member, by the name of Shatzie, who originally had a diagnosed of bulbar onset of ALS, and eventually it was found she had MG instead, and this was by route of trying the mestinon, and seeing a huge improvement. (diagnosed change not solely due to the mestinon, but this was part of how it came about)

Has your father had a repetitive stimulation NCV test? This test can be used to help distinguish between the two diseases.

good luck to you, your dad and the rest of your family.

Thank you for responding and for pointing me in another direction for further information on MESTINON.

My dad has complained of his "throat" being "clogged"
I was hoping the MESTINON would help, but I think it might be producing too much saliva
and that is what he might be feeling.

Thanks again for responding to my post.