I had written in my last post about seeing the neurologist and how he was going away and would see me in August.He was going to start me on mestinon but told me that it would be pretty bad on my stomach and give me a bad case of the runs.He decided not to start me till he seen me again in August.I spoke to my GP yesterday and she said that he maybe did not start me on it till he was available to keep a check on me while I was taking the medication,hence the leaving it till August.I am getting worried now at the effect it will have on me regarding this.Does it happen to everyone?does it settle quite quickly?I know everyone is different but if I could maybe just get some feedback on how bad the side effects are.I know that I need to go on it i`m just afraid that with having FM and now MG that it will leave me especially weak.
I also said to my GP how my husband has said that I seem to choke quite a lot some nights while sleeping,she has said that because the muscles are so relaxed as such even some saliva will cause me to choke.I have noticed that in the past few days that my eyes are geting worse,My GP noticed it as soon as I walked in yesterday,heavy lids looking like I wanted to sleep.I have told her that as she already knows my right eye closes when reading or when i`m on my computer,this eases up the double vision.The past few nights though if I try to read or even keep my eyes open I have terrible double vision and there is nothing I can do about it only close both my eyes as I cannot see properly.This is happening every night now.Is this what happens??.I also have started taking frequent headaches,they may be stress related ,i`m not sure.I know my eyes and breathing and general weakness probably wont start to sort itself out till i`m actually on the medication.I do not see my neurologist till 27th August but as in my previous post he has given me the number directly through to neurology should my breathing or weakness get really bad.

Thankyou in advance for any replies,I know it is a very long post.I feel scared at the moment as I don`t know where its all leading,I have read quite a few posts and it does seem that most of you are doing well on your medication.

Take care

Alx

Try to give yourself some quiet time of your own to try and relax, easier said than done I know, but worrying and getting stressed isn't good for anyone.

Regarding the Mestinon I take 4 x 60mg daily and I also take Propantheline, I have never had an upset tummy, it is worth asking your neuro to prescribe this when he prescribes the Mestinon. We are all different in our reaction to the meds but most people do seem to be OK with the Propantheline.

I do often find I have to go to the loo 20-30 minutes after taking the mestinon, but it is really not a big deal in my case + well worth the benefits.

Roll on 27th August for you :)

Like the others I'm on mestinon 240-300mg a day dependent on effort/stress of the day.

Early on I had some stomach cramps with Mestinon but neuro prescribed probanthine which I took for a couple of weeks and then weaned myself off. Still occasionally get the odd cramp but find in my case body seemed to become acclimatised to Mest after a while.

If you do get probanthine don't worry too much about the warning on the advisory note about not suitable for MG sufferers. I raised this with neuro and his reaction was well I prescribe it for any of my MG patients who have stomach problems and never have had any problems. Take the medical advice but make sure you give them accurate feedback, everyone reacts differently.

Thankyou so much for all your replies,you have definately put my mind at rest regarding the stomach problems.It does seem that the two medications are given together although my neuro didn`t say this,he will probably prescribe it when I see him.If not I will mention it.
I am already on a host of other medications taking 23 tablets per day and also wearing weekly butrans pain patches.These meds have been built up gradually to help with the symptoms of fibromyalgia.
I probably have the oposite problem with my tummy due to the high dosage of pain meds which I take so maybe the mestinon will balance this out
.I have been under a lot of stress recently a lot of it coming on after seeing my neuro(I thought I was dealing with things ok) so i`m wondering if that is why my eyes have suddenly got so much worse in the evening.
My neuro first told me not to night drive ,then not when im tired or feel myself becoming weaker and then the nurse pointed to something she herself was looking at and he then said well maybe best if you don`t drive at all for now ,till we see how you go.Does this mean once i`m on the meds that I have to inform the driving licience guys?My GP ask me not to drive from April till I seen the neuro but now he is also saying better not to drive.Do I have to wait till i`m settled on the meds when I see him in August before the decision to drive again can be made?.
Also when you start the mestinon how closely does the neuro monitor you as this seems to be why he is waiting.Sorry to keep asking questions but i`m still a bit lost.
I sent away for the information pack which was very good,so thankyou to the MGA for that.The MGA site has been really good,so i`m glad that I can learn about MG.All your answers have been great and have been much appreciated.

Thankyou all and take care

Alx

Peter Finney

MGA Chairman

Yes I will talk to my neurologist about driving when I see him next month.I do know i`ll have to inform the dvla about my MG.I`m still not driving at the moment as has been ask.I went to the pool today,it did loosen me up with my FM usually.I had not been in for a couple of weeks and it was awful,like wading through quicksand with my arms ,my legs just were sinking,really a bit scary.I don`t really use the jacuzzi anymore,it used to help my pains but noew I find its to hot and makes me feel very uncomfortable.

Thankyou for replying ,take care