Ive been keeping quiet on this one as its my worst nightmare.....that I end up in the situation that this poor guy is in.

1. Mestinon- improvement seen when taking mestinon is a sign that there is an issue with the neuromuscular junction. Angela Vincent stated this at a MGA meeting here in the uk in 2002. Basically an MG type illness (like the rare variant- suggested or MG)

3. Tensilon Test, if the guy is this sick then he probably wouldn't re.spond to the tiny amounts in it.

4. 8-10 hours if they were dosing every 4 hours with Mestinon then yes you would be looking at an improvement or if he had been given Timespan Mestinon. However if only one dose given of the ordinary mestinon then it would have been metabolised by his body after 6 hours and its peak would have been reached at 1.5 hrs -2.0hrs. So obviously no improvement would be seen.

5. A mental element !!!! ***************** sorry I can't find enough asterix to show a scream online! Hes joined the "I can fake my sats levels club" . How is he faking this? I'd love this Dr to find a relative of his being treated like this. Its CRAZY.

This is a horrific nightmare!!!

Im sorry to say this but some Drs are shaved chimps in white coats!

This is such a crazy situation. Need to get that first Dr back on board. As Ive continually said, if the blood tests for MG were that good then why are they trying to improve it.

I hope that this poor gentleman gets some help soon.
You are an absolute star for helping his son like this.

Love
Rach

Connie, I think it was someone else who said to go back to the first doc - it was a good idea. I just like credit to be given to those who are smart and think this stuff up!

Let me answer question 2 first. Yes, plasmapheresis is "risky" but so is giving someone in an MG crisis steroids AND then tapering them before they have a chance to work. If they are not confident in their ability to help him, he should be transfered to a nearby, larger hospital (if there is one) who are. PlasmaP is not only "plausible" it is the ONLY thing reputable and credible neurologists will do when someone is in an MG crisis. It offers fast improvement and that is what someone needs when they are as bad as this man! Steroids can make someone worse and they could've killed him.

This is the deal with Mestinon. It kicks in about 1/2 - 1 hour after taking it. It can wear off 2-14 to 3 hours after taking it. It is basically effective for about two hours. When someone is in a crisis, having Mestinon helps but it is ALMOST like having water. They would have to give him a dose more often, like every 3 hours for them to start seeing an effect.

Have they even done breathing tests? The thing with ALS, and again this is mostly the case, is that it is progressive. It does not wax and wane a lot like MG does. And those arterial blood gas readings have obviously reflected the fact that his breathing is waxing and waning.

And if this man has double vision that gets better when he closes one eye, then they SHOULD ABSOLUTELY suspect MG. Fluctuating double vision/ptosis is NOT a sign of ALS. It's like they are not being scientific about all this.

And what BS is this about blaming the patient and saying the Mestinon has a placebo effect?!!! Would they give someone with a heart attack a placebo pill instead of nitroglycerin? This is crazy and dangerous medicine and they have no idea what they are doing. If someone "normal" took Mestinon, they would get worse. And they do have objective ways to measure if he is getting better, like the clinical exam or the ABG's or EMG's.

And about EMG's . . . they would be negative on Prednisone. So when did they do them? While on prednisone?!

And antibody tests will often be negative when run when someone is on Prednisone. When were the antibody tests done?

I don't think the family is in denial, otherwise they wouldn't be trying so hard to help their loved one. How silly is that? I know people can be in denial about a diagnosis like ALS but the fact is that there is no "firm" diagnosis here, so what's to be in denial about?!!! His doctors are in denial that this man probably has MG.

I'm going to say this again: Find someone in a higher authority to help. Or an MG expert. Or anyone who can help him and soon before he dies. If it's ALS, which I doubt from what I can read, then it's a really sad situation that can only have supportive solutions. If it is MG, then they can make this man better.

And have they tested his thyroid, B12, erythrocyte sedimentation rate or other indicators of infection or anything else that may be making this worse like cortisol?!

Connie, if I could fly up to Canada and be a rep for this guy I would. This makes me ill. Literally.

Annie

Hi Annie, thanks for your replies. Really. It has also given me a better understanding of how things work for MG.

Have forwarded the info to him, do wish that I was in Canada as well, so that can help the poor man and his family better. Its disgusting, what is happening to them, so couldn't ignore it. Am keeping my fingers crossed that the patient's situation does not worsen, or I cant imagine how angry I'm gonna become.

I've also once again strongly reminded him to contact the first doctor Dr Toth, to come back and see his dad, or someone from that chapter.

Am sooo glad that I posted this here, and that there's all of you to help out. Will definitely keep you guys updated once I hear from him.

Thanks so much for the info! I've forwarded it to him. Whats happening to this man is absolutely a nightmare, it scares me to imagine how many people are getting this kind of treatment. Like I said, I'm gonna be so angry if this man was to pass away due to their negligence or ignorance, especially if he was really suffering from a MG crisis that could be treated with the right meds and care!

I can't imagine how stats can be faked, how does one retain such a high amt of CO2? By not breathing on purpose? Its crazy, what these docs are saying. And it amazes me how these docs are now saying that the family is faking it too. Who on earth would have so much time and money to fake a crisis?

You guys are absolute gems as well, am so glad all of you could help him. I am just thinking, there should be more groups or guardian angels or some society of some sort to look after the interests of patients and their families. So that they know where to look for help if they're not being treated right.

Hey Kate, thanks! I've not done a lot, just re-post his post on this forum. Its all of them *looks around* who have done most of the work! I'm also not too sure what the system is in Canada where this man is, but am so glad that others out here have the answers and the info to help him! The healthcare system in Australia is good, I've experienced it myself and its thumbs up for them! But sadly, there are lots of loopholes in the healthcare systems of many countries in the world.

Annie, on the Valeant information leaflet which comes with Mestinon over here, it is indicated that Mestinon may be prescribed also in case of …constipation, which effect, we MG'ers, would easily understand!
Maurice.

Neutro, I know, it is also "prescribed" for our men and women in service, just in case they encounter Sarin gas. But they too had overdose symptoms of a cholinergic crisis. What I meant by "normal" people is people who have enough acetylcholine, in case that didn't come across well. Sorry. I just meant that this man would be getting worse, not better, on Mestinon if he had a "normal" amount of acetylcholine.

Got news from the caregiver that the doctor gave a definite diagnosis of ALS based on his newest muscle biopsy result. They were were told a combination of "I have no idea... But it is definitely ALS"

I haven't really heard of anyone getting a diagnosis based on muscle biopsy alone, and its amazing considering that he's given a diagnosis when other neuromuscular/autoimmune diseases have not been ruled out effectively.

Have once again asked him to get help soon, or transfer his dad to another hospital who will have more experienced doctors on hand.

Just hope he listens and takes action fast.

It'll be a shame if its not ALS, and its something treatable, but got worse simply cos the doctors didn't know what they were doing.

Connie, A childhood friend of mine died of ALS at age 34. I wouldn't wish it on anyone.

Even the ALS org. website says how similar symptoms of ALS are to other diseases and they encourage those diagnosed with it to get a 2nd opinion from an ALS expert. I bet they haven't even done the bio-markers of ALS (blood tests).

You can't diagnose ALS from any one test but those blood tests do give a good indication of it.

I don't have a good feeling about anything they've done for this man. I hope their family will get him that 2nd opinion, and 3rd opinion from an MG expert, and fast.

Annie

None of this is adding up. These doctors do not seem to be ALS or MG experts. If my Dad's life depended upon the opinions of these doctors, I would've got him transferred to anywhere, even somewhere in the US. And why they think someone with MG should get better quickly, especially when they aren't giving him the plasmapheresis that WILL get him better quickly, shows just how ignorant they are of MG. The worse off you are, the longer it takes to recover. It's frustrating to know someone is not getting good help and not be able to do a damn thing about it.

Yes Annie, I know what you mean. I'm also frustrated with whats happening to this man, and not be able to do anything about it. I haven't heard from the caregiver since, and have been logging onto that forum daily hoping to see some updates that he has taken action for a 2nd opinion.

I'm sorry to hear of your friend, it must be tough losing your childhood friend to ALS. My diagnosis of ALS just got confirmed today by another neuro. I'm still thinking of getting more opinions, am just not fully convinced I have ALS even though 4 neuros have told me so. Don't think I'm in a stage of denial, just wanna explore all options, so I really hope that the caregiver does his utmost to explore all options for that man.

Once again, thanks for all your help Annie. You're better than lots of doctors I've seen. I simply love the way you phrase your advices. Can sense how you feel.