[rach73]

Hi Guys,

Im looking for some suggestions. Ive always had a really bad time with mestinon, I get awful stomach cramps and have to run to the loo all the time. I take loperimide and probanthaline which reduce those symptoms. However now Im getting really bad nausea with the mestinon, ending up with me wretching. I would rather just hurl than have to put up with the nausea.

Im having a bad time with MG at the moment. You think it can't get any worse and then you manage to sink down another level. My main symptoms are bilateral ptosis, or unilateral ptosis with my left eye (the unaffected one) roaming all over the place. Neck weakness and shortness of breath on top of the usual weakness. All I can do is sit down or lie down, watching TV or listen to the radio. If I do anymore than that Im screwed! So Im taking more mestinon than ever.

Does anyone else have this? It doesn't matter if I take the mestinon with or without food. As you can imagine Im a little fed up with it all!

Love
Rach

[DesertFlower]

Try drinking more water. I had to start drinking lots of water all day to make the internal pains from Mestinon go away. Water for me is more important than eating food with Mestinon.

I hope you find something that helps.

[erinhermes]

Protein for me was key! Any form! I also CRAVED whole milk and OJ with high pulp. For whatever reason it did settle my stomach, and I was in some serious and embarrassing pain before! Really bad!

Does your "roaming" eye hurt a lot? Mine always did. I am so sorry Rach! I wish I had more than words to offer you. Nothing, no one should have to suffer like you are right now.

Hang in there honey! You are a FIGHTER!

Love,
Erin

Originally Posted by rach73

Hi Guys,

Im looking for some suggestions. Ive always had a really bad time with mestinon, I get awful stomach cramps and have to run to the loo all the time. I take loperimide and probanthaline which reduce those symptoms. However now Im getting really bad nausea with the mestinon, ending up with me wretching. I would rather just hurl than have to put up with the nausea.

Im having a bad time with MG at the moment. You think it can't get any worse and then you manage to sink down another level. My main symptoms are bilateral ptosis, or unilateral ptosis with my left eye (the unaffected one) roaming all over the place. Neck weakness and shortness of breath on top of the usual weakness. All I can do is sit down or lie down, watching TV or listen to the radio. If I do anymore than that Im screwed! So Im taking more mestinon than ever.

Does anyone else have this? It doesn't matter if I take the mestinon with or without food. As you can imagine Im a little fed up with it all!

Love
Rach

[AnnieB3]

Erin, I wonder if you craved OJ because of the Pred; because it was high in sugar! I still worry about you having high blood sugar.

Susan, that is a very good idea about the water.

I would NOT recommend this for you right now, Rach, but a 1/2 - 1 tsp. of liquid Benadryl may help. Has to do with what you need to make stomach acid. Too much Mestinon increases stomach acid production. The three things you need to "make" stomach acid are acetylcholine, gastrin and histamine. So, if you reduce histamine with Benadryl, you may get less stomach acid. Also, Benadryl does the opposite of Mestinon. So that is why Benadryl can make MG worse.

DO NOT DO THAT RIGHT NOW!!!! You are seriously on the edge of an MG crisis. You can't afford to be playing around with drugs that could make MG worse. You could always try TUMS or something like that to reduce the acid.

You needed help yesterday. When do you get to see the Oxford guys? I hope it's really soon.

Annie

I know this article is about dogs, but this site has really good, basic info.

http://www.marvistavet.com/html/body_ranitidine.html

[redtail]

Hi Rach,

I know how you feel, I had 18 months of getting up in the morning, and being sick. Its was awful.
When I first mentioned it to my physician, he laughed and said "oh morning sickness, you're pregnant!!", needless to say I stopped going to him.
Nothing worked for me while I was taking the timespan and 4 60mg daily. I would just get up and do my daily routine of being sick.
Now that I'm on lower dose, only 2 60mg daily, I only get nausea about every 6 weeks, but the running to the loo happens a lot more often. I guess I'm hoping oneday, I will stop all the meds that may be making me feel icky, well one can hope.
sorry I couldn't be of more help
Kate

[rach73]

Thanks for those suggestions.

- water, I find a small glass of water sipped is ok, but I have to do it before the nausea gets too much, as then I cant even think about it!

- OJ I have a hiatus hernia (lucky I know!) so OJ really kicks that off so I avoid OJ like the plague. Its a shame as I love OJ.

- Protien, again if I can try to eat before the nausea really kicks in Im fine.

- I take lanzoprazole. Which reduces stomach acid because of the hiatus hernia. I dont tend to take the meds everyday, I now only use them if I have a flare up or have eaten something, like peanut butter that will then play havoc!

- It is like morning sickness as it affects me after my first dose of mestinon, which means I try and avoid taking it for as long as possible. Which probably doesn't help the MG at all. Its just if I stop taking mestinon then I will have nothing at all.

- Annie you are right I should have probably gone into hospital yesterday. I held off as a) I hate the place and b) Jamie was having a really bad day a hospital trip would have probably tipped him over the edge.

Ive actually woken up feeling ok, at the moment no ptosis. No roaming eye. It hurts a little Erin when it happens. But I get more pain from dry eye as my right eye remains just ever so slightly open but I dont blink. So my eye dries out.

However as you all know, I could be really rough in a few hours or actually have a good day. Its like playing russian roulette at the moment!

Thanks for your suggestions
love
Rach

[rach73]

I am still waiting for the appointment to come through from London. My consultant said it would be about 4 weeks to see them.

Its not Oxford, I had a hideous time there and would doubt I would ever go there again!

Love
Rach