Confused. Do I have MG? Is Mestinon right?
 

Hi, I was in Spain when the first symptom of double vision occurred. I have no idea if this is related, but my air conditioning packed in and I suffered some seriously high night time temperatures. During this time I had difficulty focusing when using my computer and later I experienced slight double vision for only a few seconds.

I then went to China where the double vision worsened. I noticed a slight distortion in my right when reading, as though the word in the centre appeared to be written on an invisible football, so I had my eyes tested and photographed - "Your eyes are perfect" they said. I was ushered to a neurologist who set me on a course of tests: blood, muscle, MRI and Cat scan for the Thymus, - All negative! By this time my eyelid had dropped, first on the left and then on the right eye. Then I was given my last test: Mestinon injection and sure enough after 20 minutes or so mu double vision almost disappeared for about five minutes and my droopy eyelid ascended.

I was given Mestinon tablets and told to take 120mg x 3 times a day. After trying this out for nearly 2 weeks, I find that it only helps me if I take the 120 mg in the morning and go back to sleep for one hour. After waking again I have good vision for only one and half hours, but my droopy eyelid is up where it should be all the time.

I am now in the UK, where I'm sure the doctors would still prefer to be using leeches and aunt Bessie's remedy, where I am told they could not offer me any solution or recommendation for my symptoms, or how I should be taking the Mestinon.

Can anyone shed light on whether they think I do have MG, should I be taking Mestinon and if so how much? I notice that most people on the site here take very little. so I am simply confused by the information I have read and what the Chinese specialist told me. Thanks.

Hi,

Sadly, nobody here can tell you if you have MG and nobody here should set your doseage of Mestinon. You *really* need to work with a primary care physician and a neurologist to determine these things, especially where you're so new to whatever condition you've developed. Ptosis (the eyelid droop) and double-vision are symptoms of MG, but they are symptoms of other problems too. Has anybody done an ice pack test on your eyelids?

For what it is worth, the "Mestinon injection" was most likely a Tensilon test - this is a very fast acting, very quickly metabolized drug that is used for diagnosis purposes.

I hope you find the answers that you need.

Best,

Brian

Thank you Brian,

Here in the UK the whole process is very slow and I have to wait months to see anyone. China was super fast, but alas I had to leave. A Venezuelan friend of mine told me that it takes a bout 2 weeks for Mestinon to work properly. "It needs to accumulate in the body" Is this right? Most of what I read here suggest it is very quick acting. Do most people have to see their physician before changing their dose? Some people here seem to change their doses. Has anyone been given instruction if and when to change it? If I wait for my next UK appointment here in the UK I will have finished the course I was given from China long before! Is it OK to just go from 380 mg a day to 0 mg? Kev.

Good luck finding help sooner :)

Anacrusis

Hi Kev,

I'm in Canada, similar systems but I have a fantastic gp who steers me through the red tape and gets things done for me. He does little actual looking after me, checks my bp, checks my weight, refills prescriptions but he is absolutely amazing at getting me in to see who I need to when I need to for anything.

If you find your symptoms returning or worsening (especially after you finish your Rx from China) go to the nearest emergency room. I'd not tell them you have or think you have MG until you can get an official diagnosis, but that you have these symptoms and basically what you've told us here.

When I first started taking mestinon, I went from not being able to swallow to eating a great steak dinner in about 30 minutes.... first pill. I disagree with the needs to accumulate. The effects wear off entirely within 4-5 hours in me.

I tweak my dosage when needed, but I've been on it for almost 5 years now. I know how my body feels when I need another pill or will soon. Also, I've worked with my gp and neuro to understand what they recommend and how to go about doing it. My Rx actually includes an extra pill per day to take at my discretion. My dosage is lower than yours 120 is a bit high as a starting point ... I've worked up to 120x4 during bad bouts and back down to my normal 60x3 when I'm not having a rough patch. But again, not my place to set your dose.

It is ok from a drug perspective to go to 0 immediately on Mestinon, I've done so in preparation for additional tests in the past. From a treatment perspective, I'd not want to be without mine.

Cheers,

Brian

Mestinon doesn't work for me. We tried several different doses, and I couldn't even get to 1 full pill a day without my muscles in my legs and face starting to tingle and have spasms (so bad you can see them, even through jeans :eek: ).

I have the MuSK myasthenia, and when I was telling my neuromuscular dr about my reactions to the Mestinon he just gave a look like, "I figured that's what would happen and it wouldn't work" because of that. We've tried adjusting dosages, and I did it for about 2 weeks before I said I couldn't take it anymore.

Thank you all!
 

Thank you so much for your great answers. It really is reassuring to find a place like this where one can ask questions and have answers, good answers from people with real experiences. Thanks again!

On a new note, I have just heard from my brother who knew a man (No not a line from 'Sexy Beast') who had the same ocular symptoms as me. My brother has managed to track him down today in Italy and found out that after many of the usual problems trying to get diagnosed, was eventually diagnosed with MG and put on Prednisone 5mg/day. After 25 days his symptoms had completely cleared up. I believe this was about four years ago and he is still as right as rain. I have tried to telephone him to find out how long he was on the medication and as soon as I can get through to him I will post it here for anyone's information.

Maiden, I've since looked online again and seen that Mestinon doesn't work for everyone, so that looks like us two!

Brian, You're talking my language. Thanks for the ideas and your experiences.

Kev.

Haha, we could start a club ;D
To be honest, my myasthenia is also somewhat mild. We (doctor and I) are doing a non-medical experiments now, by seeing how much I can do (like hours per week at work) before I get too tired overall and my symptoms act up, because my next option would be steroids and since I am only 26, not me or any of my doctors want to go that route for now. So basically I'm just trying to "deal with it", and it's working pretty well I would say. I had a few rough moments, but otherwise I think I am doing alright without meds. Once I stopped the Mestinon, my speech went back to normal, and all the twitching and tingling stopped in all my muscles. The only thing not effected (both good and bad) was my eyes.

I had the first bout of my illness about your age and then it totally disappeared for a great 15 years.
Mestinon worked to some extent for me, but it was hectic and unpredictable. For the same dose I could have a dramatic improvement, no change or significant worsening with fasiculations (muscle twitches as you call them)
I too have MuSK and now take a very low dose of its cousin-mytelase along with Vospire (which is long acting ventolin).
With this low dose I only have muscle twitching when I overdo it and/or my illness is less stable. It actually serves as an excellent warning sign to slow down.

I hope your illness disappears on its own forever.

Wow 15 years! That's great it was away for so long. My first symptom outbreak was in 2010 (when I was 24), it basically all came out in one week, double vision, really really slurred speech, tired, weak, etc. Looking back though, I had a droopy eye 3 years earlier, (but then it fixed itself), and looking even FURTHER back, I recall having some of the same "feelings" I feel now (and know it's connected to MG) back when I was in high school so probably as young as 15, I just never knew what it was.

Thanks :hug: I hope it does too! Hope yours goes away again also!