I was diagnosed with myasthenia gravis in November 2013. I am a 59 year old male. I started seeing a doctor in November 2012. I had not been to a doctor for nearly a decade at that time. I drive a taxicab 10 to 12 hours a day, 5 days a week on the graveyard shift. Two to three years ago I began to experience chronic fatigue. I thought I was becoming a bit lazy, but also chocked it up to the number of hours I drive a week. A year and a half ago I started experiencing double vision at times, usually late into my shift and late into my work week. I checked my blood pressure and it was quite high, so I believed this was the cause of double vision. During the periods of double vision, if I leaned my head back or if I leaned my head forward, the double vision would clear. I had droopy right eye on occasion. As you can imagine good vision is an absolute requirement for a cab driver. I was terrified that the vision issue would prevent me from working. Cab driving may not much, but right now it is the difference between living a comfortable life and becoming homeless.

Not having insurance it was not an easy matter to find an affordable medical solution, but I was most fortunate. In San Jose, California we are lucky to have the San Jose Medical group. A self-paying patient can see a doctor for $95 or a bit more depending on the services. My doctor started me on high blood pressure medication and the vision problems seemed to go away. I was also experience weak jaw mussels at this time, but I thought it was due to my lack of teeth. I did not even know to mention this to my doctor. The vision issues seem to diminish when I blood pressure became under control.

In September, on a weekend of course, I became quite sick. I believe I had a cold, and what I know now as MG symptoms at the same time. My primary symptoms are weak jaw, face, and mouth mussels. It was extremely difficult to clear my throat. I also lose the ability to speak effectively. I sound like a stroke patient when the more severe symptoms present themselves. This is very frustrating. Then and now I have trouble eating. I could not even hold liquid in my mouth. I could not make a kissing sound with my lips. My jaw drops and I find that I am using my had to assist it while talking or eating.

Being a Saturday I could not see my doctor, but went the Urgent Care facility at the San Jose Medical group. At the time I could not speak. If I held my nose and blew, I could not change the pressures in my ear drums. After a quick 5 minute examination the Urgent Care doctor prescribed antibiotics. The antibiotics did not help. At that time it would take me 20 minutes to drink 10 ounces of liquid. I could not take any solid food at all. I tried to drink as much as possible to avoid becoming too dehydrated. For days I could not sleep at all. Every few minutes I would need to reach into the back of my throat with a cloth to remove the mucus that was collecting. I could not spit it up at all. After 6 or 7 days I started to improve. I thought it might have been a sinus infection.

In early November my doctor suggested that I might have a neurological problem. I thought that meant brain damage and I was unconvinced. He order a blood test that revealed that I have the antibodies that interfere with the brain’s communications with some voluntary mussels. He had me see a neurologist at the group and he confirmed that I did indeed have MG. He prescribed three 60 MG Pyridostigmine (generic Mestinon) tablets a day. I responded very quickly to this, but it did not last long. After a week or two the symptoms returned. He then prescribed one 180 MB Mestinon Timespan tablets a day, in addition to the Pyridostigmine. Again this helped, but I was soon experiencing increasing more of the symptoms I mentioned above. He then upped the dose of the Timespan Mestinon to two tablets a day. This seem to help longer, but last week I was experience periods of severe symptoms’ again. He then prescribed three 20 MG Prednisone tablets a day. This is helping, but I still have symptoms, particularly if I do not get a good “days” sleep.

So my current MG medications is:

1. Two 180 MB Mestinon Timespan tablets a day
2. Three 60 MG Pyridostigmine tablets a day
3. Three 20 MG Prednisone tablets a day

I also have a prescription for Diphen/Atropine for the diarrhea side effects of the medication, but I have been quite luck and have not needed it very often. Although my symptoms are bad, the are not nearly as bad as some of the other posts I have read here. My berating is good. I can count up to 30 on a breath, my mobility is not effected, and my energy seems to be returning.

I had a CT scan last week, but it did not reveal anything wrong with my thymus. I was almost hoping that there was a thymus problem. If it was removed, I might have less sever symptoms, or no symptoms at all. But this was not the case, so I am resolved to deal with this for the rest of my life.

There is some good news. I now have a Platinum Blue Shield plan. Under this plan my medication costs drop from $800 to $60 a month for the 8 prescriptions I am currently taking. For some reason the Timespan Mestinon is quite expensive, $460 for 60 tablets. My policy also covers most of the CT scans, lab work, and other procedures that I need. It also cover almost all of the costs for my internist and neurologist appointments. If I need to go into the hospital, it would cover 90 percent of the costs. I cannot tell you what a relief it is to have quality health coverage. This was made possible by the Affordable Care Act, what my conservative Republicans friends refer to as the Obama Care Train Wreck.

Between 1998 and 2002 I had private health insurance. During those 5 years I paid something around $12,000 for a Kaiser policy, but never used it once. At the time I was a Web developer, but after the dotcom bust I could no longer afford the insurance. When thing got better a few year later. I tried to get health insurance again, but was rejected each and every time I applied. Being a overweight cab driver in his fifties is not someone the insurance companies wanted as a policy holder.

I do have a few questions:

How many others have the same problem eating and speaking due to a weak jaw and face mussels?

Am I likely to develop other MG symptoms going forward, like mobility and breathing problems?

Why is the Timespan Mestinon so expensive?

What can I do to mitigate the side effect of the Prednisone? I may need to be on it for quite some time.

Would there be any benefit removing my thymus, even though there is no indication that it is part of the problem?

It is very comforting to find a group of people who know exactly what I am experiencing.

-Mark-

Welcome to NeuroTalk:

I noticed that you are taking generic Lomotil for your side effects?

MG patients should not use products with atropine in them.

Others should be along here soon, to discuss drugs to avoid with MG.

Some of the patients with MG here use Imodium which is over the counter:
http://neurotalk.psychcentral.com/sh...hlight=Imodium

I will mention this to my neurologist. I have been very lucky so far and have not needed to take many of the Diphen/Atropine. I was prescribed 4 a day. Of the original 120 tabs that were filled on November 25th, I have only taken 25 to date. I have had only two or three minor bouts of diarrhea, usually when home. I did take some as a prophylactic to avoid a situation on a busy cab night, like News Years Eve. On balance I am very lucky not to be plagued with this particular side effect. I hope the remains true going forward.

Hi, Mark, and welcome. I have just a few comments.

Pyridostigmine is the generic name for Mestinon. So you are taking quick-acting Mestinon, plus time-release Mestinon. I wasn't sure if that was clear to you. Pay attention to when your symptoms are worse. The quick-acting kind of Mestinon only lasts three to six hours for most people. You might get some results by changing the dosing schedule of your two kinds of Mestinon (with the doctor's OK, of course).

Keep seeing the neurologist. He might put you on another drug, like Imuran, along with the Prednisone. Imuran takes a long time to start working, but it helps some people reduce or get off the Prednisone eventually.

I came down with this disease in the fall of 2009. By the spring of 2010, my symptoms were as bad as they ever got. Now, four years later, I'm better than I was then for sure. Not every patient is like me, but a lot are.

So nice to hear a happy Obamacare story!

Abby

The prednisone will keep you awake. You might try and find out if you can take all three pills first thing in the morning. Or actually your morning, which is night.

All your symptoms are spot on for MG.

Hi Abby,

Remembering that I work the grave yard shift, sleeping from 6:00 or 7 a.m. to 3:00 p.m., here is my current MG drug schedule:

1. Mestinon Timespan at 4:00 a.m. and 4:00 p.m.
2. Pyridostigime at noon, 8:00 p.m. and midnight.
3. Prednisone at 4:00 a.m., noon, and 8:00 p.m.

I usually awake around noon to use the facility, but set an alarm. I always feel stronger and better after sleeping. I wonder if I should consider skipping the noon Prydostigime and take the daily three in a more compressed time period during my working night. I often start to have more pronounced symptoms around 9:00 or 10:00 p.m., after driving the taxicab for 5 or 6 hours. But I have only begun the Prednisone.[/QUOTE]

I will be seeing him on February 3rd and will have plenty of time to learn more about my drug options. I found this useful from the Myasthenia Gravis Foundation of America Web site:

Note: I cannot post this link at this time. My post count is 2 and I will need to get it up to 10 before the system will allow me to post URLs. I will post it as soon as I have permission for links. It is on a MGFA Web page title that begins with: "Drugs to be avoided . . ."


I learned that women get MG much earlier in life than men, so they are compelled to deal with it in their prime and for much longer periods. Yet another example where women get the short end of the stick. I just turned 59 and believe that early, mild MG symptoms began when I was 57, particularly chronic fatigue. I blamed myself for this because I though I was loosing my motivation and becoming lazy.

I don't want to use the expression "a blessing in disguise", but there is an opportunity for many positive results from this. I have already dropped 70 pounds since November 2012 (even before the MG diagnosis), down from 315 pounds. My blood pressure is under control and my cholesterol is good. For the first time in several years I feel much less fatigue and am more motivated and ambitious.

Yes! Before when I was a self paying patient I felt that my doctors were doing me a favor, since we got a reduced price for treatment at all levels, something around 50 percent reduction over insured patients. Since I have quality health care insurance, I feel like I can take a more proactive attitude to my treatment. For example, I would like to get to the position where I do not need the steroids. I do not like what I have read on long-term use.

Before I might not have questioned drug choices. Now I plan to take an active roll in these decisions. BTW I'm sure this was my problem, not my doctors. I probably could have been more questioning with them when I was a self paying patient.

Take care,

-Mark-

Thanks for the tip. I only got a few hours sleep on Friday and Sunday. I paid dearly for this while working those nights. I got plenty of sleep on Saturday and had a very strong day. I actually felt good throughout the night.

Take care,

-Mark-

Timespan mestinon is more expensive because there is no generic for it. I take generic Imodium for diarrhea attacks, which don't happen every day, but it sure comes in handy when I need it. It is very inexpensive over the counter.