To Annie and other boffins
 

I'm just wondering, with the many posts recently that I've read on the ALS forums, there seems to be many confusion between differentiating MG and ALS, and many who have been diagnosed to have ALS are thinking that they may only MG and not ALS after all.

Are there any tests to differentiate or rule out?

I have directed quite a few of them over to this site, but I'm not sure if they'll ever have the time to check in considering what they are going through on their side.

The last update I receivd from the poor guy whose dad was in ICU for 3 months, was that the docs still insists that its ALS despite whatever the family does, and its now been more than 100 days but the dad's still in ICU.

I really wish that more can be done for these poor souls, but the amt of info I have on my side is really limited, and I have little or no medical knowledge thats able to be of any use to them.

Should we have a sticky just so that people who come on this site can refer to that immediately? I don't know, am just wondering...

Hi Connie
 

I was having a nosey around some ALS / MND sites over the weekend, purely as I wanted to know what you were up against.

I found out that they treat ALS / MND with Mestinon, to relieve the fatigue in the muscles. So if you are taking mestinon it maybe that you can continue taking it.

Thanks for the update on that mans father, I was wondering about him the other day.

From what I have read and remembered, there is no specific test for ALS/MND, like a blood test. But I could be wrong. I believe its mainly diagnosed with clinical findings in a neurological examination, so reflexes etc. Also the SFEMG, but as we know this shows there is a problem with electrical activity in the muscle / neuromuscular junction and it doesn't actually tell you what the problem is.

I really wouldn't be surprised if there are people out there that have MG and not ALS/MND. If they are seronegative on the MG blood tests. Unfortunately for us and the Drs, I believe that MG is a widely varying disease, its probably many different diseases that are yet to be uncovered or named.

Sorry I can't help you more.

Love
Rach

:hug: I wish I could help but sadly I don't know enough about MG never mind ALS. All I know is as I have aged it seems my MG is more like MS then MG. Pain that I never had before is now present {whole left side} So I just don't know is MG progresses or what. I send positive thoughts to that poor man and his family.

Hi Connie
 

Have been doing some more looking around on the internet and I found a forum, think it was called ALSforums.com, sorry my memory is shot and I should have written it down.

From what I was reading on various sites though, ALS/MND is extremely hard to diagnose, given that so many of its symptoms overlap with other diseases, especially MG. It is diagnosed through clinical presentation of symptoms (neurological exam), brain scans and SFEMG and EMG. A lot of the websites said the diagnosis should be given only when all other diseases / conditions have been ruled out. There isn't a blood test for it.

Im sorry I can't help you anymore than that. I hope one of the other Boffins can!

Love
Rach

Connie, They could start by reading this.

http://www.alsa.org/patient/opinion.cfm

What this man needs is a specialist. I cannot believe he is still in ICU. Are they giving him any MG treatments, just in case?

It's almost like he needs BOTH an MG specialist and an ALS specialist. Then they should discuss it all between them. In some ALS patients, it isn't obvious right away if it's ALS. Some people progress more quickly and it's more obvious. There is not a definitive test for ALS, while there are more definitive ones for MG. Experts will be able to tell the difference.

I still think they should do plasmapheresis. If he gets better, it's MG. If not, it's ALS. That is usually what they do for someone with seronegative MG who has gotten worse and is still not more than clinically diagnosed (after having tried Mestinon). Mestinon can work in the short-term for ALS but not in the long-term.

It's doctoring like this that makes me so angry. If you don't know what to do, make a patient wait for MONTHS for help? Dear doctors: Get up off of your behinds, do what you have sworn to do and help this patient no matter what it takes!!!!

I hope he can get answers soon. Without answers, how can he get the appropriate treatment?!

Thanks for checking back on this man, Connie.

Annie

Thanks Rach, Joanmarie and Annie.

Rach: I have been onto that forum too, thats how I got to know all these people. Thanks for checking cos of me, thats so sweet of you. I do know that its difficult to differentiate between all of those, theres just so many diseases that its tough to guess. However, i do agree with Annie that the neuros who specializes in these should know! Else who do we turn to for help? Other wise they shd at least do their best and really listen to the patients.

Joanmarie: thanks for the positive thoughts! I too don't know alot, and thats why have to refer them here. but most of them are so busy coping on their side, dont think they hav time to check back here.

Annie: I tried pvte msging u but cant even find a button! Lol. Why is this so? Thanks so much for the link. I don't think they've given him any mg treatments, other than when he was first admitted. I've posted the full update on him on the original thread.

I went to my first clinic visit today, and understood why some patients give up asking questions. The neuro whom I saw today wanted me to do another blood test just to be sure. I asked what does it test for, and he said its called GAD. I repeated my question, and he just said "this is the only center that does this test. i don't have time today." I felt stupid. Lol. Amazingly the first neuro whom I ever saw (and fired) is the senior of this neuro. I was referred to him as he specialises in neuromuscular disorders. The neuro I fired specializes in epilepsy and general neurology (how general can it be?), and yet he never ever once got his senior to look at me. I had to be referred in from a private neuro outside of that clinic before I could see my current neuro. Just find it a waste of time, not to mention a far cry from what they call efficiency.

Ohhh Connie,

I do feel for you. Please don't feel stupid. I've come to the conclusion that neuros or any specialst really, never explain anything they either dont think we will understand (for fear of scaring us or confusing us, not sure why!!!), or that they don't truly understand themselves. Many a time I've walked out of a "specialist" appointment nearly crying with frustration because they havn't answered my questions, or have just totally ignored a question.

I'm so glad you can come here and talk about it............
take care
Kate