Nothing to lose trying MG drug

[rachelg]

Following diagnosis last week with PBP (Neurologist 99% sure of his diagnosis) my husband will be going in to hospital on Thursday. They have decided to try him on the Myasthenia Gravis drug. The neurologist said "we have nothing to lose and some MND patients respond well to the drug" though he doesn't believe Mark has MG.

Has anyone tried this treatment with any good responses?

 

[rose]

Rachel,

A forum member named Shatzie did respond to MG treatment, and her diagnosis was eventually reversed from PBP to MG.

You did not say which medication they will try your husband on... I believe that Shatzie took Mesotin (spelling probably is not correct by me)

BethU also had some success with this same drug helping her initially, but then the benefit wore off.

I think you've posted enough now on this forum, to where you should have private messaging abilities. If you (look up at blue title bar at the top of this page) click on "Community" and then "members list " from the pull down choices, you can search by name for Shatzie and send her a private message. When you access her profile page, you will also be able to find her past posts about this, and she has a blog.

Please let us know how your husband responds, good luck to you both!

 

[BethU]

Rachel, the drug for MG symptoms is Mestinon. I noticed on the Patients Like Me forum where they list meds people are taking that a small number of PALS were taking Mestinon. As your doctor said, it's certainly worth a try. I got more energy and physical strength from it, but it was contra-indicated with my heart meds, so I had to choose which to take. Also had some side effects.

Good luck!

 

[Shatzie]

Although there are several medications for MG, the mildest and first medication that you are given is Mestinon. When I went to my new neuromuscular specialist last June, he noticed that there had been no progression in the four months since my diagnosis except that my FVC went from 96% to 94% and the nurse told me they were having problems with the machine that day. She also told me that you can only really tell if your FVC has gone down if you are tested over a period of time on the same machine, so the difference might just be within the margin of error of being tested on two different machines. The doctor told me he wanted to put me on Mestinon, "Just to see what happens". Within a week I noticed a marked improvement in my energy and my speech almost became normal. When I went back three months later, he was astonished at my improvement. He told me that some ALS patients might get slight symptom improvement from Mestinon, but the improvement I had meant that I most likely have MG. So he tentatively changed my diagnosis from ALS to MG, even though I had tested negative three times. When I went back last month, he officially said that I don't have ALS.

 

[rachelg]

Thank you so much for your replies.

Shatzie you must be so happy to have had your diagnosis changed - how fantastic.

Would you mind me asking how poor was your speech before you started taking the drug? Mark's speech has deteriorated so much. Close family members are able to understand what he is saying because we speak with him everyday, but everyone else struggles and I have become interpretor. Even I struggle sometimes to get what he says first time.

Also how was your swallowing. Mark really struggles with anything other than soup consistency and is hopeful that he will have a feeding tube fitted soon as eating has become a chore rather than a pleasure and Mark is losing weight quicker than we can cope with.

 

[BarryG]

Rachel, if Mark is not able to eat anything but soup I would urge him to get a peg tube right away, or at least as soon as it can be arranged. Don't wait for eating to get worse or for weight loss because it is easier to maintain weight with the tube than to regain it. Every one of us here who has a peg tube will tell you that. And he can still eat as much as he can by mouth.

All the best

Barry

 

[Shatzie]

My speech sounded like I had had a few drinks or a strong pain pill. Now most people don't notice I have a problem. Quite often there are days that it feels absolutely normal to me, but I usually feel like I now have a slight lisp.

After I went on Mestinon, my swallowing improved so much I stopped thickening my liquids. Now I only occasionally choke on liquids, but it's usually because I don't think about choking much anymore and forgot to tuck my chin under.

 

[rachelg]

Thank you Shatzie. We are keeping our fingers crossed for some good results.

Barry - we are hopeful that the hospital will get on with the tube soon. Mark has actually lost 28 pounds since Christmas but as he started off overweight it has been difficult to get the weight loss taken seriously but having spoken to the Neurologist last week he assured me that things would be dealt with quickly from now on.

Sometimes Mark will try more "solid" food - through sheer determination - but 60 minutes to eat a piece of chicken is exhausting and Mark becomes bored if choking doesn't make him give up sooner.

 

[BarryG]

Rachel, I know all about exhaustion, boredom and choking while eating. I am at the point of not trying to eat most things because of those three factors so I can sympathize. My peg tube has saved me from most of that.

I'm not sure which is worse, not being able to eat or not being able to talk. I have a speech device that I use because I, like Mark, cannot be understood by most people and even my close family has trouble. If you haven't tried it yet, there is a free speech program for windows called E-triloquist that I use on my desktop and laptop computer. It is very easy to use and it really helps me communicate even though I wish I were a better typist.

Barry

 

[rachelg]

Thank you Barry. Just downloaded program and Mark has been playing around on it. At first he said he would not want to use a device like this but as his speech gets worse he is coming round to the idea.

He thinks if he brushes up on his typing skills whilst practising then at least when he really needs to use it he will be pretty smarty pants on it.

Thank you so much

 

[Ronelle]

I was diagnosed initially with MG and took Mestinon for months. I chose to stop taking my heart meds to see the effect. It helped in the beginning but my speech got worse after a while and my arms began to weaken. My diagnosed was changed to ALS.

 

[Jennifer51]

Rachel, if Mark is not able to eat anything but soup I would urge him to get a peg tube right away, or at least as soon as it can be arranged. Don't wait for eating to get worse or for weight loss because it is easier to maintain weight with the tube than to regain it. Every one of us here who has a peg tube will tell you that. And he can still eat as much as he can by mouth.

All the best

Barry

I normally agree with what you say Barry, but a word of caution to anyone, having the peg MAY NOT mean you can eat anything you want. I had the peg fitted 3 or 4 weeks ago and went for a video fluroscopy test (swallow xray) this week. After 2 small teaspoons of the liquid, they halted the test and I was told nil by mouth FOR EVER.
I was extremely upset by this. Please check with your health care people (in the UK it is your speech therapist) who will advise if you can eat or not. If there is any doubt they will do the swallow test.

 

[rachelg]

Update

Just to update my post.

Mark is in hospital at the moment - we thought for them to try the MG drug.

A new neurologist/mnd specialist has been to see us and said that they will not be trying the drug.

He has absolutely no doubt at all that Mark has MND and definitely does not have MG.

They have let Mark home for the night on strict instructions that he returns tomorrow morning, they feel that tonight he needs to be home with his family. He will start Riluzole tomorrow.

So there we have it.

 

[BarryG]

Rachel, I am very sorry about Mark's diagnosis, I know how hard it is when they finally give you the definite results. It took me months to believe that it was true for me and even now it doesn't seem real.

Jennifer, I am also sorry about your swallowing study results, it is truly an awful thing to not be able to eat. The peg tube is functional but pleasureless. I know that I too will be NPO in the not too distant future (I already can't drink any liquids other than sticking my head under the tap) and I'm not looking forward to it. And you're right, when I said that a person could still eat with a peg tube I didn't mean that it would help you eat any better than you did before, I meant that what you could eat before, you could still eat. A swallowing study should still be done, probably before the peg tube, to figure out what is safe to eat and what is not. And that will change, as it has with me, as the disease progresses.

All the best

Barry

 

[Jennifer51]

I had a swallow study done long before the peg, when it was still ok to eat baby food, when they did the peg they warned me that it would most likely be nil by mouth for ever....when they did this last study and told me for sure, I was really depressed...and told my husband...maybe foolishly...that if he did not give me any small tastes of food, that I would not have the tube food either...I cant bear to have EVERY pleasure taken from me...so I have an egg cup full of pasty food once a day...what the hell...I understand the consequences and would not advocate it to anyone else..but that is my decision. I just wish I could do something with my speech now
Have PMd rachelg with support