[dog lover]

I wanted to let you all know that I went to see my new neuro on Fri. and he is fabulous!!! He went over my test results with me and was so patient in explaining things to me. My antibody test was pos. for binding and blocking. He didn't see the results of the modulating so I don't know about that one. My EMG also came back pos. for MG. He said I do have generalized MG and started me on Mestinon. He told me to start with 60 mg 3 x a day and I could work up to 120 mg 3 x a day. Unfortunately yesterday morning the nurse called to see how it was working and I told her I wasn't having stomach cramps but was waking up sick in the night from the excessive saliva. She had the Dr. call me back and he told me to quit taking it for 2 days and call him back on Wed. He said we may have to try something else including steroids. I am so disappointed but think part of this may have been my own fault. I was drinking milk to settle my stomach and am sure now that it was making the saliva harder to swallow. I am going to ask him if I can give it another try and drink it with a glass of water. Have any of you ever had this side effect and have you found anything that helps with that? It is so gross to say but I felt like I was literally choking on my own saliva. Within 6 hours of not taking the Mestinon that was completely gone.

I also had a CT scan of my thymus done Fri. I am hoping and praying there is no thynoma because I am terrified at the thought of having it removed. I will if I need to but truly hope I don't. The nurse told me that their hospital does the robotic approach and it is less invasive and cuts down on the recovery time. I guess that is a somewhat encouraging. Sorry for the long post I just needed to vent for a minute. I think the reality of this disease is kicking in and I am still trying to figure out why it has taken so long for me to get a grip on what is happening. I have talked with my husband and family but it is so hard for them understand what has happened to me. It is so nice to be able to share with others who understand completely because they are living it too.

PS-Welcome to all the new folks!!! I am trying to catch up on posts right now
Kendra

[AnnieB3]

Kendra, Congrats on the "final" diagnosis. Now you can deal with the management of MG.

The doctor who diagnosed me is an MDA Director and MG Expert. He started me off on a low dose of Mestinon - 15 mg. Why? Because I was sensitive to meds in general. What can happen is that you can have side effects during the first days, sometimes longer, of taking it. Then after a while, your body gets "used to" it and doesn't have them anymore. I had increased saliva for the first couple of days. Since then, I've had absolutely no side effects. I'm currently on 90 -100 mg. every 3 hours, round the clock. So maybe start low and very slowly increase. Of course, run it by your doctor first. I wouldn't give up on Mestinon altogether!!! Maybe even try the syrup, which I take.

Also, sometimes it's not increasing the dose but the frequency that is key. Sometimes taking 60 mg. every four hours or three hours works better. More is not always better!!! Adjusting Mestinon can be a real science. Or art.

I hope you don't have a thymoma! Did they do the striated antibody test? The Acetylcholine modulating test can also indicate a thymoma if it is really high.

Go easy on yourself and your family. It is going to take as long as it takes to get used to having MG. Heck, you just got diagnosed! It took about five years for me to "accept" that I have MG. I doubt I'll every fully accept it. It always takes longer for those without the illness to "get it" or deal with it. You can't truly understand a disease unless you have it. Inform your family and friends as they can handle it. Go easy on them too. They are going to have to adjust to the "new you."

I'm glad you know proof positive what is going on. Since you're sleepy . . . . . . go rest!


Annie

[Pat 110]

Hey Kendra,

I'm so glad you have a diagnoses and it will take time to really sink in. As far as the mestinon goes, pretty much the same thing happened to me. The Dr. just had me stop for a few days and start over with a very small dose and work my way up till the symptoms were relieved. I too am very sensitive to meds, so even after all these years of taking it, I sometimes need very little. I also have all the lovely side effects, so the less I need to take, the fewer the side effects. Point is, you should be able to find the amount that works for you. Talk with your neuro...I don't see why he wouldn't let you try again before going on to other meds. Also, I have to take mine with food and a full glass of water. That helps with the side effects for me. It's always difficult in the beginning, but it will get easier...just give it some time. Take care.

Big Hugs,
Pat

[dog lover]

Annie,
I think you're absolutely right about starting out slowly. I really think that was alot of the problem. If he is ok with me giving it another try I will go back to 1/2 tab at a time. I am glad to hear you had the same side effect and that it went away after a couple of days. I am going to keep my fingers crossed.

I don't know if they did the tests you mentioned or not. Since the modulating antibody was the one he couldn't find the result for it makes me wonder. I hadn't worried much about it until I went in for the test. I kept laying there thinking this was something I had to be ready for if need be. I also became more concerned because of this heaviness or ache right in the center of my chest. I have never had any breathing problems so don't think it is that I'm going into a crisis or anything. I go back to see the Neuro on Nov. 10 and will find out the results then I assume. They didn't say anything about calling me with them.

Thanks for the pep talk about family. I am blessed with a great family but sometimes feel like they all have their own way of dealing with it. I think my sister is going to be my greatest supporter in this. She seems to want to learn all she can about MG. My dad finally realized a couple of weeks ago how sick I really was. He called me asking me to come down and help him with the neighbors cat who was hurt. It was about 8:00 PM and I was exhausted and couldn't hold my eye open. He looked at me for a long time and said "Baby your eye is worse, are you getting sicker." My sister told me he called her to tell her he was worried about me. Slowly but surely they are starting to get it. I am partly to blame for not telling them when I don't feel good. I tend to just say I'm tired but I think I am better off telling them how bad I really feel. I am definitely going to go rest. It is almost time for Dancing with the Stars!!! I am going to relax and watch that. Thanks Annie


Pat,
I am so relieved to hear you restarted it and did ok. I am definitely going to make sure I eat and drink a glass of water. I am convinced starting out slow is the way to go. Thanks so much for the support!!!
Kendra

[JCPA]

Hey Kendra,
It sounds like you are finally getting some answers and results. I know you are relieved to find a good doc too!

You spoke about family dealing with MG. IDK if you have ever read this but there is an article called "the spoons theory" that someone wrote about a chronic illness and the analogy they used to explain to their family what is going on with a chronic illness. Just google it and you can find it. I actually typed this up in my own words and let my family and friends read it to help explain why I sometimes can't always participate when I would truly love too.

Hope you can try the mestinon again and you can tolerate it at a low dose too!

Take Care
JJ

[rach73]

So glad you have got your diagnosis. Thats brilliant news. Lets hope theres no Thyoma.

I was started on Neostigmine Bromide 15mg every four hours. The first two days I was fine.On the 3rd day my stomach felt full of gas. I put it down to IBS. On the 4th day I started drooling like a dog! There was so much saliva I couldn't cope with it. I then started vomitting. It was highly embarrassing as I was working at the time. Then the stomach pain started like someone was stabbing me. Someone found me collapsed outside the building and convinced me to go to hospital. I was then perscribed probanthine 15mg and Mestinon.

I still had problems with the mestinon, like stomach cramps and a runny bottom! I was put on 6omg 4 x a day. I wish that I had been put on a smaller dose and worked up, until I could tolerate it better. Instead of just being put on the full dose straight away.

Im really pleased that you have found a neuro you can work with and that you have a diagnosis.

Love
Rach

[suev]

Hey Kendra!

Glad you like your neuro and that your dx was made with pos antibodies (makes it easier for the medical community...lolol).

Like the others have said, I'll bet your initial experience with Mestinon was too much too soon. I reacted badly to Mestinon in the Dr's office....felt light headed. So they started me on 15mg every 3 hours which only caused minimal increase in saliva ... and teary eyes! We kept that dose until the 'wateries' stopped (a coupe of days was all it took).

Then we lessened the time between doses with the same 15mg until no wateries. Then we slowly increased the dose and lengthened the time. I was on their recommended dose within a couple of weeks - and now have no noticeable side effects (luckily!!).

Some 'bodies' are just more sensitive to meds than others. Hopefully, your body will adjust gracefully with a slower introduction. It really is wonderful stuff!! And it's all I have had to use so far...very thankfully!

Good luck with it!
Sue

PS. Gald they are testing for thymoma - - but hope results are negative.

[dog lover]

JJ,
I am sooo relieved to finally have my results back and I LOVE my new Neuro!!!

I had never even heard of the spoons theory but looked it up online and read it this morning. What an incredibly accurate way of describing any disease. I will forward it to my sister and have her read it and I am going to have my husband read it this weekend when he gets home too.

I left a message for the Neuro this morning and told them I would really like to give the Mestinon another try by taking it with water and slowly working my way up. I really don't think they will have a problem with that but am anxious to hear back from them. Thanks for the info JJ.
Kendra

[dog lover]

Hi Rach,
OMG, your experience sounds just like mine!!! It is horrible to feel like you are choking on your own saliva. It sounds like starting slow and working up is the way to go.
Thanks,
Kendra

[dog lover]

Suev,
I learned real quickly that the pos diagnosis makes all the difference in the world. My Optho neuro told me yesterday that we had good pos test results and that was a good thing because it helps them know how to treat it.

I think you're right that it was too much too soon. I'm glad to hear it only took a couple of weeks to build your way up and that you don't have any side effects.

Hoping and praying the CT comes back normal!!!
Thanks to all of you for your input. I truly appreciate all the info you have to offer.
Kendra