I have just spent 4 days in Hospital with breathing problems and mobility problems. This is the first time I had a quick response in the emergency dept. Normally a patient can wait up to 6+ hours, but the nurse saw my medic alert bracelet and I was seen within 10 minutes much to the disgust of a full waiting room. I have a viral chest infection and according to my Neuro my mestinon had to be increased.
It finally seems that the hospital staff are realising that some conditions need to be treated ASAP if not sooner. I have waited for hours in the past.

I was told in Feb that I have myasthenia gravis. I was not clear on this disease at first. to be honest i am still not clear about it. I know that it has effected me and is interfering with my job. i drive trucks for a living. So i have to look for the well being of myself and others. i have not giving up on getting better. i declare it. so i hope to encourage others and live a happy life no matter what.

Try taking half the dose of Mestinon. It only lasts about four hours. When I first started on Mestinon it gave me terrible gas and diarrhea. Was sent to a gastro Dr and had a endoscopy none of which did any good. I finally figured out it was the amount of mestinon that was the problem. Currently I take half a 60mg about every four hours. When MG symptoms are more intense I can take a larger dose without stomach problems. That's what works for me.

Beannie, When I first started on mestinon it gave me terrible gas and diarrhea. Was sent to a gastro Dr and even had an endoscopy but still had problems with the mestinon. I finally figured out it was the amount of mestinon that was the problem. Switched to half the dose, half a 60mg every four or so hours and the problem was solved. When the MG symptoms are more intense I am able to tolerate more mestinon. Worked for me. Best of luck to you.
AL

Hi. My name's Jeff and I've had myasthenia gravis for about fifteen years, but it wasn't properly diagnosed until a couple years ago. My first symptoms were blurred vision, but it eventually spread to my back and hip muscles. Looking back, it should have been an obvious diagnosis based on the symptoms, but somehow it got missed by every neurologist I saw...and the neurologist who finally diagnosed it refused to believe it was generalized, despite the fact that I couldn't walk anymore.

Eventually I realized that he hadn't treated many of these cases and ended up switching to University of Maryland. Its been an uphill battle since then. I've been through three rounds of PLEX, one of Rituxan, and am being treated with Prednisone, cellcept, mestinon, and IVIG, but I've gone from barely functioning to relatively stable. I'm currently tapering the Prednisone so that I can have a thymectomy. I've been told I have to be at least at 30mg, and am currently at 37.5 (down from 60 a few months ago). I'm hopeful that it'll help in the long run, though.

Hey

Hey I'm Quantum.

I was diagnosed with MG at 17, and had a thymectomy at 18. I struggled really hard ended up having IVIG, and everything in the early stages, and of course took mestinon.

After a few years (I was 22ish) the thymectomy kicked in, and I was really good for about 10 years. Lately (I'm 34 now) I've been having major issues.

I just got out of the hospital a couple of days ago, after having a major attack (breathing issues, ending up in the emergency room.)

Right now I'm trying to figure out just the right dosage of mestinon, and just taking a couple of weeks off.

That's pretty much my story

Thanks.

Hi, Quantum, and welcome. Posts to this sticky-thread sometimes don't get noticed. Feel free to start a new thread.

As you probably know, Mestinon has a very short half-life. If you feel like you're not taking enough, the first line of attack is to shorten the time between doses rather than to increase the dose (with the doctor's OK, of course). I hope your neurologist will also discuss the possibility of other treatments for you: immunosuppressants like Imuran, CellCept or Prednisone, and IVIg infusions.

Thanks for joining. This is a great place.

Abby

You really have to be proactive about making sure that u find a neuro that specializes in the more rare things like mg my first doc over prescribed me because he didn't understand what he was dealing with and almost killed me before my family doctor stepped in and sent me to a hospital in a major city that understood what they are dealing with

Hi Beannie, I'm brand new here, but have been in the docs offices for years getting diagnosed (they had no clue, was seeing rheumatologists for years). My neuro said that new literature points to the idea that the bloods are almost useless, because they are most likely many many antibodies that can cause mg, and our current system tests for very few.

I am waiting for my MuSK and LEMS, but he already gave me the mg diagnosis. I have all the LEMS symptoms with dysautonomia but he still strongly feels that it is mg (from the SFEMG), he says mg does NOT fit in a box and his patients present in very different ways. I have sensory weirdness and so much other garbage, he could see through the mess and I finally have a diagnosis. I hope that your doctors listen to you and take you seriously, it took me an unbelievable number of years of ER visits to get a doc with a clue. Good luck to you!

Hi all,

For me, it had started about 10 years ago, with body pains and weight gain. I visited Ortho, but he said nothing serious, and prescribed some exercises. With exercise, the pains would only increase. After a great deal of pain, stress, finally i was diagnosed with Subacute Autoimmune Hypothyroidism. Taking medication for it for the last four years has not improved my pains a bit. Now it has only worsened. I have chronic chest pain, swallowing difficulty, pain at the back of my left leg (MRI revealed one hypoechoic region at the sacroiliac joint which was surmised to be idiopathic edema.), breathing difficulty, and progressively weakening left side of the body. When I visited the doctor, he burshed off the symptoms as GERD, though I do not have belching and heart burn. Medication for GERD does not improve things either. Though I had undergone endoscopy once, and it revealed patulous esophageal sphincter.

So far, there is no ptosis, but I can feel that there is some issue with my left eye. After I apply Kajal, I can notice that certain portion of my left eye lid is slower to return to normal position after being stretched. And often, I involuntarily squint the left eye when sitting idle till I notice it and set it right.

I have a hunch that I could have mild MG with thymic abnormality, but no doctor is taking this seriously. My chest pain fluctuates and sometimes it becomes terrible to bear. In those occasions, all I want to do is to lie down, and do nothing. I also have mild cervical spondylosis.

I got x-ray done, but it revealed nothing. CT Scan is too expensive. Please advise me.