MG Crisis but doc refuses to acknowledge it as MG
 

Hi, read this on another forum, was thinking if any of you have any suggestions for this poor guy here, whose dad's been suffering in the ICU for 100+ days, but yet to get a diagnosis. Apparently his dad was placed on Mestinon for a while, and all his symptoms got better, but his doctors recently took him off Mestinon and his symptoms all returned very quickly. Now he has to be put on the ventilator, and is deteriorating very quickly. Doctors there seem to think that he has ALS but from his marked improvement while on Mestinon, I would be thinking of MG, as havent really heard of ALS getting better while on Mestinon. Anything to recommend?

An excerpt from what I heard from him:
"After being intubated he was almost immediately started on Mestinon as well as prednisone to help his respiratory recovery, and over the course of about 3 and a half weeks was given larger and larger doses. We immediately saw imrovements. He could hold his head up again, and after the intubation was brought to a tracheotomy we noticed that his speech has begun returning as well. He eventually was able to speak with little slurring and more air behind his words when he had his "speak valve" on. His swallowing abilities also seemed to return (we were in the midst of testing them with different fluids and foods). Four different neuros consulted all were of the opinion that it was a myasthenic crisis which brought us into the ICU and that the subtype of myasthenia he had often required 100+ day stays in an ICU setting to wean from the ventilator and make a recovery.

Things seemed to be improving at a slow but noticeable pace.

On Monday, a new doctor began ICU rotation and said that since admission, little progress has been made. He has totally stopped the mestinon and brought in a new neurologist who has said that MG is on the bottom of his list of possible diagnoses and that ALS is more likely. Today, 2 days after the last dose of mestinon, his speech is again very difficult to understand and he is again slumped over unable to hold up his head and is again having a lot of trouble breathing. Blood samples sent out showed negative for both of the possible tests for MG. We had initially been told that there is a percentage of MG patients who show negative to both of these tests."

3 days later:
"Just returned to work from visiting my Dad at the hospital. He can no longer hold his head up without it being propped on one or both hands. When I asked him if he could hold it up at all, he said he could but "really needed to concentrate on it", and even then could only go about 5 or 10 seconds. His speech has returned to the way it was when he was admitted to the ICU. This is all after 3 days off the mestinon."

The guy seems totally helpless and just thought that some of you may be more experienced with all these. Any ideas? He's located in Canada, City: Calgary, State: AB. Anyone he can contact who's experienced in diagnosing MG?

I just googled to see if there is an MDA clinic or organization in Calgary. There is a chapter. I found an e-mail & clinic list


calgarychapter@muscle.ca


Foothills Medical Centre
Adult services

Address:
Area 3 University of Calgary Medical Clinic
3350 Hospital Dr NW
Calgary, AB T2N 4N1

Tel: (403) 944-4418
Fax: (403) 270-8830

Contacts:
Physicians:
Dr. A.K.W. Brownell
Dr. T. Feasby
Dr. D. Zochodne
Dr. Korngut
Dr. Toth
Coordinator:
Roula Simmons



Please pass this along. I hope this person gets help very soon.
Jenna

Connie, Why the heck does this happen?!

What they should be doing is plasmapheresis. If he gets better, it's MG. If not, it's something else.

You guys have attorney general offices that can do things on an emergency basis, just like here in the U.S. Here is the Ontario site.

http://www.attorneygeneral.jus.gov.o...t/overview.asp

Here's Alberta's AG:

http://www.justice.gov.ab.ca/ministers/jag.aspx

They need to know that this man's life is in jeopardy and their action is urgent. I couldn't find that you guys have medical boards like we do.

When in doubt, get a lawyer for an hour or two. That'll get those doctors off their butts.

First, it is VERY dangerous to start someone on steroids while in a severe MG crisis. Second, have they taken him off of steroids too? He could then be in an adrenal crisis!!! Have they tested his cortisol? Again, the "protocol" is to do plasmapheresis.

Second, Have they checked his arterial blood gases? What are his O2 stats? I know, you probably don't have these answers but this is what the caregivers of this man need to ask.

Also, have they done the MuSK antibodies too?

Someone should ask these doctors if they want this man to die and to have a lawsuit as a result of it because they didn't treat him appropriately. Worse yet, they treated him for MG, took that treatment away and he got worse.

Yes, ALS can temporarily get better on Mestinon but not over time. I would ask what OBJECTIVE evidence they are using to say it is ALS. EMG's?

This is crazy doctoring and I hope this man gets help soon. I'm sorry I can't help more. That was very sweet of you, Connie, to help out.

Annie

Thanks Annie and Jenna!
 

Thank you so much for all the info! I've passed the info along to his son, do hope he gets well soon and hope the docs start doing the right things.

I too find it appalling that this is happening in the hospital, and in the ICU. They have tests to verify if it is MG and they're not. According to the caregiver, his son, the patient has had EMGs done, the first two were clean, the latest one seemed to have pointed towards MG but yet they still persisted in taking him off the Mestinon. Requests to start the Mestinon again were rejected by the docs. They have no tests to prove that its ALS, the reason for taking him off the Mestinon was simply cos they only saw SLOW PROGRESS. Worse still, the doctors keep changing so they aren't even sure who is the doctor in charge. The whole family's stressed out, seeing the patient finally getting better and now deteriorating rapidly, yet they can't do anything.

Am really hoping that the family will find strength to really get the doctors to give them some answers.

Its really sweet of you to help too Annie! Will keep you updatedonce I hear from his son. :hug:

Connie, that was so thoughtful of you! I sure hope this poor man gets the help he so desperately needs. I hope his son gets back to you with some good news soon. Hope you are feeling better today! Take care.;)

Hugs,
Pat

Connie, I have something else to add. This isn't always the case with ALS but most often it is. There are always exceptions to any disease.

MG is a "head and down" disease because it usually starts with ptosis, neck or swallowing issues.

ALS is a "foot and up" disease because it usually starts with the feet.

I brought this up for two reasons. One, they should be doing an EMG on his lower legs to look for ALS. Two, the length this man has been ill should be a clue to them. If it was rather rapid, it is probably MG. Though some cases of ALS progress more rapidly, it's odd that the entire body is affected all at once like he has it.

Annie

Hi Connie!
 

Hey connie! This makes me sooooo angry! What more do they need? I know that only 10 days in the ICU costs over $100,000, so I can't imagine what his bill is going to be like!

What gives this new guy the right to rule out MG? Why do so many have to suffer b/4 they are dx'ed? Plus, the hosp is a breeding ground for all sorts of creepy crawlies......not so great if you are too weak to even hold your head up. I remember those days. They were so scary - understatment of the year!:(

I do not know what Mestinon is used for other than MG, but isn't a POSITIVE response to MG a HUGE indicator OF MG?Sounds like attorneys need to get involved b/4 more damage is done.

I pray that he gets the help he so desperately needs b/4 it's too late. Tell his son to fight tooth and nail - the squeaky wheel does get the grease - ya know?

Big hugs!
Erin:D

Hi Annie!
 

Thanks for all the info Annie. It was great help to his caregiver, who came back with all these info. From what I read, the patient did start with bulbar symptoms, before it spreading to his limbs. However all these deterioration happened within a span of 5mths. I too would think that its too fast for ALS, though the doctors insist that some ALS deteriorate so quickly within one year, and pass away the same year. I don't think anything showed up in his EMG to point to ALS, but his docs are saying its ALS simply because of his progressive weakness and deterioration, and his lack of fast improvement when started on Mestinon. The doctors seem to be giving lots of excuses, but here's what his son said.

How it started
"Around December 2008 he began having difficulty swallowing and speaking. The symptoms were manageable and tended to come and go. Things remained like this for a while and I didn't really think much of it. In April 2009 we went on a trip to Toronto/Montreal and i noticed had almost completely lost the ability to hold his head up, and his speaking had become much worse. He began complaining of seeing double and having other vision problems. He used to be an avid "city walker" and loved walking for many KMs throughout different cities we were visiting. This trip he wasn't able to go more than 2 city blocks without having to get into a taxi and head back to the hotel. I had noticed that these symptoms were improving with rest. Things began to rapidly deteriorate about a week after returning from vacation. To hold his head up he had to have it propped up with both hands. His speech had become extremely difficult to understand... It seemed to be one long slur most of the time. During all of this we were waiting for a neurology appt. which had come with an 8 week waiting period. By mid-may, he was no longer sleeping through the night and could barely eat or speak. One morning, he was almost totally unable to make it up a flight of stairs and became increasingly confused. He had begun hallucinating and was appearing to have problems breathing. We headed to the hospital and he was admitted immediately as he was in the midst of respiratory failure."

Tests done
"My Dad has had every other test for MG... EMG, Tensilon, two or three different blood tests... even one that had to be sent to the UK... Everything has come back negative. All signs point to him not having MG except for his positive response to the mestinon."
*He didn't state if MusK had been testsed, I'll remind him to check again*

Current Situation
"After 4 days off the Mestinon, his condition deteriorated steadily. He could no longer breath on his own during the day for more than a few hrs (previously he had worked up to 16), his speaking ability was totally gone, and he could no longer walk even a meter (10 days ago it was up to about 350mtrs).

Pleading with the Drs had no results and I was begining to think that perhaps they were right and he wasnt actually a myasthenic and the mestinon never was doing any good. I arrived Saturday morning in the middle of rounds and the first thing the Dr said was that they were restarting the drug because of his rapid decline... The dr was very specific and said that the efficacy of the drug peaks about 8-10 hrs after the dose and that by then we would see results if it ever was helping him.

Saturday night and still no improvment, in fact he seemed worse... He asked to be put into bed at around 7pm (usually he stays up until around 10) and he was still needing more and more ventilator support. Things really didnt look good. Sunday morning however he was improving, seeming stronger and could speak a little bit. The Doc was unimpressed and thought that my Dad might simply just be trying harder during his assesment tests and that we may have been experiencing a placebo effect.

Things got interesting at around 5pm on Sunday. His speech has improved about 75 percent, he could speak in sentences once again, and his head and neck could once again hold themselves up without being propped up by his arms. I went and asked the DR what he thought about the change in condition and he said "i am still pretty certain that the mestinon isnt actually doing anything, I am stopping the orders for it"... I asked him to come into my Dads room and actually take a look at him. He was shocked and kept saying "neurology said that if we didnt see any change in 8 hours that we would never see one" ... He finally admitted that he really does not have much backround knowledge about MG or even MND..."

What really amazed me was what the doctors said when asked if his dad could start the Mestinon again.
"most of the hospital staff are still leaning towards ALS or another progressive MND. As if he had totally forgot what had happened last night, the Dr came in this morning and said "yes, voice is better... neck is a little better... I am still not convinced. Next thing might be to switch him out to sugar pills and not tell you guys and see if you keep noticing 'improvements'... This might be all mental here"

As to what Annie had suggested, the patient actually had Dr Toth from the foothills clinic come over to the hospital he is at and evaluate him for a week. HE is the one who gave the firm diagnosis of MG and said that it was a rare subtype which usually required a lengthly ICU stay if a respiratory crisis was reached. He went back to his "home" hospital though and they have since had 2 different neuros and 3 different intensivists.

Plasmapherisis has not been done. His wife brought it up twice and the first time no one really seemed to know what it was, and the second they said it was "risky" and left it at that. The patient has had two courses of IVIG which seemed also to help him in his recovery. Until the MG medication was stopped, he was on an upwards curve of very gradual improvment. I think what has thrown everyone off is how slowly it was going. One of the Drs just decided that it shouldnt take this long and that he had an MND and not MG.
They do blood gases every few days. When he came in, his CO2 was so high that he has having hallucinations from it. He was that far into respiratory failure. Since being in the hospital it has been a little high but consistently at the same level which they think might just be "normal" for him. For a while they stopped doing blood gas testing because he was breathing fine on his own during the day then being rested at night on the ventilator. His son said one was done 2-3 days ago and it was fine.

The steroids were started, in very large does, about a week after arriving at the hospital. He was just on prednisone from what his son thinks... They have slowly been tapering it off.

Questions I have, any comments?
1. The patient started showing marked improvement after about one day from restarting Mestinon. The doctors refuse to take that as the response from Mestinon, as its after the 8-10 hours specified by their neuros. Can it take longer Mestinon to take effect for some Myasthenics?

2. They mentioned that Plasmapherisis is "risky". I understand that it has complications, but is it considered risky since there are medications and others to help prevent the complications? Is Plasmapherisis suitable in his current condition?

The doctors seem to be thinking that the family is in a stage of denial, and so refuse to take what the family is saying seriously. I've asked him to try his best to get Dr Toth to see his dad again, and to at least inform someone from the MDA chapter of their situation, to see if anything can be done.

Thanks Erin and Pat!
 

Hey thankss so much for everything! I wanted his son to come to this forum, am waiting for his private messaging function be enabled so that he can come here if he has time, to posts his queries directly so that it'll be quicker and more precise! In the meantime just wanted to help him wif some of his queries through all of you. Thanks so much for all your replies, I'm sure he's overwhelmed with the info that all of you gave.

I too, hope that the poor man and his family gets some real help from the doctors soon, a stay at the ICU definitely isn't cheap, and to waste time with all these doctors who don't seem to know what they're doing, definitely isn't a good way to spend all that money. His son seems to be extremely stressed out now ( I would be if my dad's being treated like that without any explanation), and the doctors are thinking that the whole family's in some sort of radical denial. I'm not sure if he's in a good enough state to ask for help from the AG office, or if he has enough strength to do so. But have already forwarded all the info from Jenna and Annie to him, am sure he finds it useful.

Will keep you updated once I hear from him again!

Wow Connie,

well done on all you have done, I've kept my nose out of this one, as hospitals in America seem so very different to here, and I have no idea of how things run there.

Thankfully here if you are seriously ill you end up in a public hospital,they are very good mind you, and incure no costs what so ever.

Hi
 

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:grouphug:

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

Thank you!!!
 

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.

:grouphug:

Hi Rach!
 

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.

Hi Kate!
 

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. ;)

Quick update
 

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.

:hug: 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. :D

Hey! For all of you who have been wondering what happened to this man, heres an update from his son. I was also anxiously awaiting news. Finally got it on 2nd sept.

Pasted the whole lot of it so that I don't miss anything out. =)

*****

My dad has been in the ICU for 102 days now, still without any clear diagnosis. We have been given MG three times, ALS twice, and very vague dxs without even a name twice. We have been told both that there is absolutely no potential for improvement and that what my father has is genotype of ALS which mostly attacks the respiratory system and when most people afflicted with it die they retain most of their ability to move their legs and arms, and the actual cause of death is respiratory failure or a respiratory infection.

We have good days where he seems to be generally improving and gradually getting stronger and we have days where he is completely bedridden. There have been 7 neurologists and COUNTLESS other doctors giving their opinions on this and no one really agrees. We have been preparing for the worst though...

My dad has been trach cradling for 16-18 hours a day now and some doctors have said he is totally ready to get off the ventilator completely and others say that he never will. We keep having setbacks (pnemonea twice, many UTI's,) and so we will begin to see deterioration which would be characteristic with a MND but then it seems to reverse once the infections are discovered and treated... At the begining of last week he was walking a few hundred meters twice a day every day, and going to the hospital gym each day for about 30 minutes. This week he cant really even walk more than about 5-10 meters. Do yout think a deterioration in a MDN could come on so quickly?

A lot of the confusion and uncertainty is the question of have we seen any improvements over this 100 days. It is hard to tell for me because I see him twice a day, every day! There was a plan to transition him onto using a bipap at night and a little bit during the day so he could at least come home and live the last of his life out at home where he would be happiest.

My main question is... the symptoms he had seemed to come on quite suddenly... everything kind of happened from December-April, and he was admitted to the ICU in May. With such a rapid progression occuring for the first five months, why would things have (at the very least) stabilized for the past three months? And I think there has been some gradual but very clear improvments since admission. One respirologist told my family that the improvment we are seeing is because of proper nutrition and being on the ventilator part time each day. I could totally accept that if the improvment was just for the first few weeks of admission but it has been going on up until this week. We have had no marked deterioration aside from when he is sick with something else on top of whatever this is... Could it be because of the general care he is getting in hospital?

***

It drives me crazy when I read of whats happening. If only I could b there to scream at the docs.

Thanks for the update Connie :-)

Oh my goodness, I'm speechless.
I really don't understand how this sort of thing can happen in this day and age.(well no maybe I do :-( )
And why oh why arn't the drs talking, instead of telling the family different things.
Grrrrrr, I'm sooooo frustrated

Thanks Connie, That's just inconcievable. I can't understand why they don't have a patient advicate not affiliated with the hospital. I wonder if they were able to bring the Dr. back that thought he had MG? He seems liked their best hope. Such a damn shame. I will keep that poor man and his family in my prayers.

Pat

I'm not sure with the medical systems over there, but sometimes there are just some black sheeps clothed in the doctors robe. Lol. I guess we get that everywhere.

Frankly speaking, I don't know if the family has tried getting back the first doc, though I'd like to think that they did but somehow failed. I also do hope the son has time to come and visit this site.

To ConnieS...the O.P. of this thread...

Did you ever find out what happened to this gentleman?

Lydia

Hey, no there wasn't an update again. He didn't reply to any message and till now sometimes I still wonder what happened. Just kills me sometimes when they post n forget about it. :/

ConnieS, It occurred to me that it seems wrong that no mestinon is a final word as there is proof it helps. My mind started to go and if it were my mom I would see if the regular doc meaning his GP or pcp however you consider it could exert pressure to restart it.

I did see somewhere that mestinon worked/ was used for ALS tho it wasnt something I found readily. If I can find it I will post it here. I have to say that I would be going to a hospital big shot and sitting on him till his got my dad the mestinon.

Annie59

OPPS, eyes and brain really off today. Just noticed this was from older post and there is not contact at this point. tried to cancel but failed.
Annie59

Hi Annie,

I once took Mestinon for a while, it gave me slightly more energy but it I still progressed. The energy it gave was kinda short lived. Lol.... I remember when I took the Tensilon test, my symptoms improved, for a short while. i was on a high and kept laughing. Other than that, spasticity n everything remained.