Thanks Rach
Who's referring you to oxford?
I printed off the numbers for the uk mtasthenia gravis site and seems there are about 10,000 patients in the uk but the split of the classifications has not been done in any detail.
An average four Gp practice will have Obe Mg Patient . guess I am it for my practice.

Hi Rach

I have only recently found this website and consequently your post of five years ago. I'll keep to the point here. I also live in Devon, England.

I was diagnosed two and a half years ago with Ocular MG. I attended the Royal Devon and Exeter Hospital and was given a bottle of Prydistogmine to take when driving. In six months or so the mg went into remission, only to return in the general form three months ago (or perhaps before). Since then I have been given a larger bottle of Prydistogmine by my GP and been left to get on with it. At last I have managed to get an appointment with the consultant who I originally saw. Unfortunately try as I may I have been unable to confirm that he is a neurologist.

Can you please tell me who was the neurologist that you referred to in your post? Or time having moved on who the present consultant is for the East Devon area.

Hoping that you were eventually listened to,

John

To PMCPMC and rach .....yes this makes sense. The lung doc at Mayo said with breathing this involved you should be in a wheelchair meaning the rest of my body is not as advanced as it. This is one of the toughest pieces for me getting diagnosed tho I was diagnosed with probable from a MG crisis hospitalization. It was classic. But luck of the draw the hospital was out of Tensilon and I was seroneg so the diagnosis was withdrawn based on the Mayo neuro. BUT the mestinon fixed my breathing during that MG crisis and worked at 60mg every 6 hours for a year. Now I have to take less. Tolerance change. So I am in the place of only getting out to doctor appointments and missing my grandkids so so so so so badly.....

My breathing causes me the most problems at night, so I definitely need to take the meds at night, if not increase them due to a return of breathing issues. Last night, I had the worse time breathing and sleeping, because I could not allow pressure on my lungs.

I started on mestinon 3 weeks ago and was doing great on 30mg every 3 hours. After 5 days, I had to increase to 60mg every 4 hours. Worked great until about the third day when I had to take a 90mg in mid-afternoon before I could get results to improve. But, then onlly needed 30mg for rest of the evening. I am quickly learning that the dosage may need to be constantly monitored as to daily activity levels-stress, physical etc. Once I got over the 1st two week adjustment, I can tell when my body needs "more oil/gas" to get going again. LOL Best of luck.

Hi - the way I understand things - mestinon is simply helping the nerves connect messages to the muscles. It does not affect the course of the disease. In other words, the "cures" of MG are the treatments where one gets a thymectomy, is put on prednisone, IV plasmapheris or IvIG. These treatments are the typical methods of trying to halt the MG attack of antibodies against the nerves/muscles. Ask your neuro about your treatment.

Tresa, There was a study specific to MG and a few others that were not which said that Mestinon may in fact suppress the humoral immune system which makes antibodies.

Mestinon is a cholinesterase inhibitor. It inhibits acetylcholinesterase, the enzyme in our bodies whose job it is to mop up acetylcholine on a regular basis. It's a checks and balances situation. What Mestinon does is keep it from eating up what acetylcholine we do have so that we can use more of it for an extended period of time.

I thought that clarification might help.

There are many MGers who take either regular Mestinon or Timespan at night. We can't afford not to.

I'm concerned about this revving up of the system you refer to, Annie(59). Could it be an allergic response to bromide and not the Mestinon itself? Mestinon is not known to have that kind of response in the body.

Annie