I look forward to everyone's advice and attention to detail, because I have been on a very long journey.


Over ten years ago, I woke up only able to freely lift up my right arm/leg. Days later, I recovered to a significant degree, but I still had to be conscious to lift up my right leg, though my right arm had pretty much recovered.


The Neurologist thought stroke and MRIs were ordered and came up nothing. I had a nerve conduction test which showed peripheral nerve weakening, so he thought I had some disorder in which the nerves weakened over time. (Sorry, he had a very thick accent, and I could not understand him. I was too young/naive to speak up or ask him to write it down.)


Flash forward, Dec. 2009, I wake up fighting to breathe; I forced myself to cough, until my throat hurt.


I was literally scared to go back to sleep. The next day I saw a doctor, who said he thought I had pneumonia. He gave me antibiotics and inhalers.


Follow-up showed no improvement, but I was increasingly aware that I could not sleep on my left side. If I did, I would wake up, feeling as if I was drowning, and I could feel tightness around a portion of my left lung during periods of rest.


I reported this symptom to doctors. I had pulmonary functions tests (both showing a fail to exhale on a portion of the test), sleep study, CT-scans, and another round of MRIs.


The MRI showed that I had an enlarged thymus with a remnant on it, which they said was nothing significant.


My primary doctor and radiologist thought the symptoms were indicative of MG, but I had to get a formal diagnosis from a neurologist.


I did and the lady was a joke. She didn't even look at my chart, so I kindly asked for another neurologist.



Neurologist #3 looked at my symptoms, which were oddly only on the right side, and suggested a trial of mestinone. It worked fine while the dosage was low, even enhance my muscle strength on the right side, but as soon as I increased the medicine, I was left practically paralyzed for three hours on both sides. It was a scary feeling.


I was ordered to stop taking the meds, and I was referred to a neuromuscular specialist. I had another nerve conduction test, which proved no weakness, but the previous one that was over ten years-old did show weakness.


He saw that the "remnant" growing on my thymus was now 5.7 cm "tissue" and was suggesting a thymectomy, but he wanted to order another round of MRIs with and without contrast.


Fortunately, the tissue on the thymus had stop growing and it was benign. However, my NIGHTTIME breathing was getting worse, in that I was now no longer able to sleep on my left side or back for long periods of time, without feeling deprived of oxygen.


Long story short, he told me to resume taking mestinone but keep the dosage low 90mg/a day, which remember at first worked wonders for me, giving me muscle strength. However, I was not able to remember whether it supported my breathing, since I pretty much slept on my right side to avoid an interruption in my sleep.


This time, the doctor wanted me to pay attention to whether the meds were allowing me to get a proper night's rest, and I must say they did, though there is slight blurriest in my vision from time to time.


I looked it up and blurred vision is a side effect, but I don't know whether I should stop taking the meds, because of that.


Anyway, I have a follow MRI in about four months to monitor the tissue on the thymus.


What I want to know is whether or not I have MG?


The doctors have said it was hard to determine, because I only have weakness or symptoms on only one side.


After much thought, I think I must have weakness on my left side, because I literally felt as if the left lung wanting to expand but struggling and constricting, whenever I would recline on the sofa for about twenty minutes or so.


It felt as if the weight of my body reclining on the lung was too much for the muscles to support in that position. If I stood up, it was much better, but the pulmonary function test showed I had difficulty exhaling on two tests.


I don't know. I did know I had slight breathing concern while in an upright position, doing minimal activity. However, it was nothing compared to my nigh time sleeping on my left side.


All I know is that my case is different that a typical MG case, if it is one at all. I just want to know if someone with MG have atypical symptoms or am I on the wrong path?

At this point, my neuro-muscular specialist is treating the symptoms, not diagnosing. Last count, I had my primary doctor, radiologist, and one neurologist saying possible MG.


The one with the most credentials is still not saying that. If it is not MG, then I might be harboring a tumor on my thymus, but I read that 20% of MG patients have a thymus with benign tumors.


Hmmm....

Hi, and welcome -- have you check out our MG forum? Here's the link: http://neurotalk.psychcentral.com/forum77.html

If you browse some of the other forums, you might find information there that helps you.

You've sure been through a lot. You've come to a good place. You'll get lots of support and, hopefully, some answers!

Hi, and welcome to NT! This is such a great place to come to, with many friendly, caring and helpful people.

We're so glad you found us!

Welcome to NT

This is a great place for information and resources. Lots of caring people to get to know.

I'm sorry for all the mystery. I know knowledge and understanding is the key to managing challenges we face. I hope you get a solid diagnosis so they can help you.

See you around...

Thanks. I'm off to the MG thread.