What is Myasthenia Gravis
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. At about 14 cases per 100,000 (in the U.S.), it is one of the lesser kno...
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blood test confusion
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When I was originally diagnosed with MG, I never saw the blood test results (my mistake). She told me that's what I had and went on to talk about treatments but to make sure she sent me to another neuro who said based on my symptoms, he agreed and that he knew it was MG and that is what he's treating me for. Shortly after, I had an MG crisis and spent a week in ICU. During that time, they did the same blood test (which I still don't know what it's called) and this is what they told me. They said .4 is positive, my results were .1. But until they find something different, that MG is what I have. That I am seronegative MG. I failed all the tests but I have all the symptoms. Then he said I have other symptoms not ordinarily seen in myasthenics so they continued to test me for other things which didn't show anything. So MG it is,,they say. I told them I had blood tests by my original neuro that said I was positive so they obtained those and the lab results from her were like 1.4 or 1.7, I can't remember which but would put me way above a positive reading. They said that test will always show the same and that they believe those labs were a incorrect, that someone made a mistake. I don't know what to think. I still have all the symptoms including the respiratory part which has put me in ICU twice and an ER visit once in the past 4 months. I'm being treated with pyrodistigmine, cellcept and the last hospital visit, they started me on prednisone. Does anyone know anything about these blood tests? Do I need to have the tests again? Why would it show the same result everytime? He really confused me..I just don't understand. Anyone that can shed some light, I'd appreciate it. I'm just constantly doubting and wonder if it's something else that I have wrong with me.
Posted on 07/04/09, 02:07 pm |
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I have not started any of these meds yet. I already take 20 meds for other autoimmune disorders. I am kinda freaking out when people mention steriods. I dont like steroids yet from what I read there does not seem to be any choices. Are there any holistic choices? 
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All the blood tests I had were sent to Mayo Clinic and each one came back as normal. My Single Fiber EMG came back as inconclusive. My neuro-opth put me on Mestinon and I had immediate reaction. Doc said 85% of people with MG have normal test results. He said my response to Mestinon is conclusive even though none of the technology provides quantifiable proof.
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When I was first diagnosed, I was on 120 mg of mestinon, every 4 hours...After the thymectomy, that dropped to 60 mg, twice to 3 times a day. Usually twice..I had horrible tummy problems on that high a dose, if your catching my drift..Bad cramps, ect.
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I take 120 MG of pyridostigm (generic Mestinon) every 4 hours during the day and a Mestinon time-span at night. If I'm late for a dose, my vision tells me. I had heard that too much can cause symptoms as well, but that's clearly not the case for me despite the high dose. At first it bothered my stomach and I had to make sure I ate enough with it. Then I began making sure that I was taking in enough liquids (to help with the IGIV headaches) and the pyridostigm was much more tolerable. Once I accidentally took too many (it's always an handful of pills and I had forgotten that I had some to put in my pillbox for the day) Wow! Then I had too much....double vision that was nearly impossible to pull together, slurred speak, excessive saliva, and some muscle twitches. So, I would suggest making sure you are getting enough liquids to help with the stomach issues and any other side effects. Good Luck,
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