Hi Daisy6381, welcome to the group although it would be better if you were never in the situation where you ended up here. Getting proper diagnoses with MG is an adventure for some with negative blood pretty common, don't give up, there are other tests they can do to confirm it but the vision problems and the fact you improved with Mestinon are good indicators you have it. I am taking 5 X 60 Mestinon as well as Prednisone and Imuran. The fatigue and eye problems you have are common, I still have them and I have been in treatment for around 2 years. Eventually you adjust to it as your new normal although you can still run into extreme situations which occur for no reason you can explain. Some of us go through episodes where we have difficulty speaking, eating, walking around, the things you used to take for granted become achievements and others go through hospitalizations as you've probably already read through some of them. Sometimes my Mestinon works better than others but mostly I have only positive things to say about it because I was so hopeless and helpless before I started taking it, I pretty much thought my life was nearly over. Now I can manage at least. Hang in there, there are many lucky people in here who are managing the disease and a few are even in remission.

Take of yourself,
Good luck with your testing,
Carl

Hi Carl, thank you so much for your reply. The morning I woke up and my symptoms improved, I had an overwhelming feeling that the mestinon was working and the diagnoses of MG is an accurate diagnosis. My plans are to see a specialist at Mayo Clinic. I have a lot of questions and am very fearful of the unknown.

I'm glad to hear that your life has improved since taking the mestinon. That gives me hope.

Thanks again and you take care too!
Robin

Hi,
Mestinon does not work for everyone, but most of us get help with it. I had to take as much as eight 60 mg mestinon pills during the day to function when MG was first diagnosed and that didn't resolve my double vision. Only after I took prednisone for about 4 months at 60 mg/day did the double vision go away.
My mestinon prescription was up to 120/mg per every 4 hours as needed. The as needed meant that I could tell if I had enough or not. I couldn't take 120 per time, so took 60 mg every 2 hours if I needed to be very active, the rest of the time much less.
Mestinon helps, but does not stop the deterioration of our nerve to muscle connections and so that is why folks with MG have to take something to slow down our immune system from manufacturing antibodies that attack us. Mestinon is sort of like taking an aspirin for a brain tumor-- relives the symptoms but for most of us does nothing to prevent MG from getting worse.
Mestinon goes into our body, in about 30 minutes begins to help, and about 4 hours later is gone. It really is best described as acting like an aspirin on a headache. So if you wake up feeling better it would be unlikely it was from mestinon unless you took it at least a half hour before you felt good, as any you took more than 4 hours ago would have worn off.
The CT scan is likely to see if you have an abnormal thymus gland, as that sometimes is the cause of MG. In normal adults, it is almost shrunken to nothing having done its job when we are children. Sometimes MG can be a side effect of cancer, especially thymus cancer, but others too, and so a good workup includes checking for cancer of any kind. This is rare, but does happen often enough to be tested.
There are several types of MG, with different tests for them as well as some kinds that seem to not show up on existing tests. So diagnosis then is often based on symptoms and sometimes response to mestinon.
Often MG is associated with other auto-immune diseases. It seems that when our immune system runs amuck, it can attack many different systems. I have 3 different auto-immune conditions including MG. So treatment with an immune system suppressant helps in all of those.
And of course there is always the possibility that it is not MG. A mis-diagnosis is worse than no diagnosis.
Good Luck
Russ

Hi Russ,

Thank you for your reply, it’s so helpful in understanding this disease. I struggle as it is with FMS/CFS now this. It’s very upsetting and I wonder how I’m going to cope with another illness.

I can’t imagine taking the mestinon at such a high dose. I’m having issues just taking it at 30mg. It makes me feel sick. I’m to up my dose to 60 mg 3x a day.

Thanks again and good luck to you too.
Robin

Mestinon messes with the digestive system. In the morning i took 2 loperimide (Imodium) to help with the mestinon side effects. I also always took it with food --maybe an energy bar or at least something.
After a month or two the side effects became less (or maybe I got used to them). I wanted to function, and the high doses let me. I quit taking it about 5 pm and not overnight as it gave me leg/calf cramps that were vicious. I found stretching by doing pushups against the wall helped with the muscle cramps. I also got eye twitches.
However, for 4 months without the doses of mestinon I would have been unable to do much at all. My wife was in cancer treatment at the same time and I wanted to be functional.
I chose prednisone as the immune system treatment as it was the fastest and it did not tie me to a hospital like IVIG. I think a month or two at 60 mg/day would have worked -- but my neuro wanted me to start at 20, then move to 30 and stay there and just wait. I was in a hurry and so she OKayed the higher dose that worked good to get me reaonably normal by 4 months from diagnosis. Of course there were mahy side effects of prednisone too, but after I got the symptoms under control, it takes much much less prednisone to continue with control.
I did not want to delay getting my life back, and larger doses of mestinon and prednisone were a way to do that and I figured the side effects were worth ridding me of the MG problems. And for me, that was true.
Good Luck
Russ

Russ,

I will try Imodium, thanks for the tips!! I definitely make sure now I have a full stomach when I take the mestinon. I made the mistake several times of not eating something first and I got so sick. Now I eat a little more than usual and I notice the fuller I am the better, less side effects.

Also, this last week I noticed my calf’s were really hurting and I wasn’t sure why. I have fibromyalgia and I suffer from chronic muscle pain, but this is different. Like a cramp exactly what you described. Now I know I wasn’t crazy and it’s the mestinon. I also been having the muscle pain in my traps and neck.

I really hope I don’t have to go on any steroids. I use to get trigger point injection every month and I gain 40 lbs. I’ve worked hard to keep my weight down. I don’t like the side effects either.

I’m so sorry to hear your wife was battling cancer and you fighting your own battle with MG. That had to have been so hard. Thank goodness you were able to get the right combination of medication that made it possible for you to function. I’ve been amazed by the stories in this group. The information that is able to be exchanged between one another is so valuable. We can fight the fight together. Thanks again and I can’t tell you how much I appreciate you taking the time to respond to my posts.

Robin

Hi Daisy and all. I was diagnosed with MG back in Sept 2016. After 6 hospital stays and 38 Plasmapheresis sessions, I am starting to now get a little strength back. I am still on Mestinon but I have decreased my daily from 150mg, 4 times a day to 60mg 4 times a day. I also take a 1 mg Glycopyrrolate with each dose to help reduce some of the wonderful side effects that keep you in the bathroom for hours. Presently I am on Cellcept at a dose of 4 500mg twice a day. In reading these wonderful posts, I have not seen much mention of the Cellcept. Is anyone else on this? I understand the issues with the vision, speech, and general fatigue and with me they seem to come and go. My best time is early in the day, and later at night, usually after a nap. Lately I am noticing sever hand, arm, foot and leg cramping. The type of cramps that will make you cry. Does anyone else have any input on this? I want to offer this, to those newly diagnosed with MG, it gets better if you take your meds, learn to slow down, get rest, and respect the disease. Another great web site I have found is http://www.myastheniagravis.org/we-can-help/support-groups-2/. The subject of what can make myasthenia gravis feel worse is a great list of what to avoid. I was not ready to retire but I was forced to as I could no longer work. I just got my disability and yes, this is a disabling disease. I hope to be here for any support anyone needs so if you want to ask me a question or just want to talk, email me at wsk176@gmail.com. I have had 5 neurologists working with me and telling me I was the toughest case they have seen. I am going to see number 6 next week. Keep well and keep your stress levels low as they can also exacerbate the symptoms.

HI - I was diagnosed about a year ago. The mestinon didn't help my double vision at all. after about a month my Dr. and I switched to prednisone which also didn't help my double vision but did get rid of most of the other symptoms I had (speech and muscle fatigue). After ramping the prednisone up to 80mg every other day without eliminating the double vision we tapered it back to 20mg every other day and added 150mg of Imuran every day. It's been about 9 months now and while I haven't seen any of the other symptoms come back I still have double vision 24/7 which is really tough to handle daily. Not sure this helps at all except to say be open to your options when one drug doesn't work and you need to try others. I fought getting on prednisone as I didn't want to gain weight but surprisingly I haven't gained a pound. Again - be open - not everything will go as planned so you need to have a patience. Good luck!

Thanks wskimball and Cwfk for your input and responses!! The variation of symptoms and how differently we all respond to medication is eye opening.

I have my second appointment with the neurologist in 3 weeks. All of this is somewhat overwhelming since I am newly diagnosed. I will definitely keep an open mind and have patience.

Wskimball , I do know what you mean about the severe cramping, I have had the same problem. Yes it makes you cry. I have had several episodes this past week.

Good luck to everyone and thanks for the replies and input! This group is amazing and at least I don’t feel so alone anymore.

Hi Daisy6381 and wiskimball, the Mestinon is hard on us but for me it worked and I am happy to have it. I haven't come up with any solution for the stomach issues myself. I seem to have more problems when I eat out so I take something(Phazyme extra strength) although one Dr. suggested Prilosec) before we go out. I have weird cramps with my toes where they twist themselves and quiver, arch of my foot and trigger finger cramps. The worst are the calf cramps, they hurt real bad and touching them is painful, before I had the disease that was how I got rid of the occasional calf cramp, rub it out) but now I just tough it out, sometimes the calf cramp is accompanied by a cramp running up the outside of my thigh, go figure. Sometimes I get a cramp in my right shoulder/back if I've been using my right arm a lot. My Dr. thinks I am hard headed and try to do too much so maybe this is part of the problem. The Prednisone has helped the most with my eye issues(in fact I insisted on it because Mestinon wasn't working well enough) , so worth it but it can cause you to have to go on Statins and Metformin so they test you frequently to see how you are doing(I am fine so far). A reason you may not see as many people on Cellcept here in the US is some insurance companies won't pay for it, it seems they can always find a study somewhere to justify their decisions. If you are allergic to Imuran then I think they will pay for Cellcept though. There are also some other immune suppressants , they just are not as popular.

Take care everybody,
Carl

Hey Blink. You brought us some interesting points. The cost of Cellcept is quite high and my insurance company wanted me to use a mail order system to get it. I have tried that in the past and I will not try it again. My point is this, through insurance the generic Cellcept (mycophenolate) is still several hundred dollars per month. My dose is 8 500mg tablets a day or 240 per month. I do not go through insurance, instead I use the wonderful service of GOODRX. If I go to the CVS at Target my cost is $108.00 per month, Regular CVS and Walgreen pharmacy's are about $360.00 per month with no insurance and using the GOODRX. Needless to say I truck up to Target once a month. I run several of my meds through GOODRX because of the savings. This is also a good program if you are on medicare with part D and stand a chance of hitting the donut hole.
As for the sever hand and foot cramping, I am going to start tomorrow doubling my Mestinon to see if that helps. I am dreading the return of loose stool, and diarrhea, and all the issues that come with it but the cramping is bad. By the way, taking a probiotic, a good probiotic seems to help. Hang in there everyone, we have to keep up the good fight.
Walter

Hi daisy,
I was also diagnosed two years ago also but all my blood work did come back negative. I finally had the musk test done then it was confirmed . The only medicine that helped immeatatly was prednisone . Now it is a combination of mestinon prednisone and imuran.
Good luck
Mark

Thanks for the reply mark. I need to verify with my Nuero Ophthalmologist specifically what he checked for. All I can remember is that it was for 3 panel blood test. Still, my vision is really bad. I’ve had a few hours of normal vision when I wake up in the morning and when I’ve been able to stomach the mestinon. I’m having a terrible time taking this medication. The muscle spasms and stomach issues have been horrible for me and also night sweats. I see my Neurologist in a few weeks.

Thanks again.
Robin

Hello to all on this great group I have had MG for 10 months and take mestinon and cellcept I understand that everyone is quite different with this MG and Russ and Blink are very knowledgeable when i get cramps most in my feet I get in tub or run warm water on the area and it works for me . Good luck to all

In response to Cellcept, I was originally denied by insur company, put in for an exception and was granted in a short time. It is better recognized these days as a treatment for MG. As I know it is a great help for some, that was not the case for me. I took it for 1 year and I became worse with added daily dizziness, vertigo, imbalance, migraines and major GI upset. As far as the cramping I had some with higher doses of Mestinon But more when cellcept was added.