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...
Join Now
|
personal experience |
|
| Other in Kansas City | |||||
| Added by: | nataliecleeton | ||||
| Post: |
It is probably too late for this advice by the time you are on a MG support site, but in case you meet someone else going through this, my daughter was 13 when diagnosed with MG with a Tensilon test OUTSIDE A HOSPITAL setting. My husband and I signed a release, and we were NOT INFORMED of the risks associated with this test (my husband is a nurse and I am not a nit-wit-the risks were not outlined or we would not have done it).
My daughter had a cardiac incident from it, which made the initial diagnosis so much more terrifying than it should have been. Bottom line is that if you want a fast confirmation that you MG, Tensilon is fast, but there are dangers. Her blood test came back positive a week later, and we definitely could have waited a week for the diagnosis. If you can't get positive bloodwork, Tensilon will tell you, but make sure you do it in a well-monitored hospital setting. |
||||
| 4 Recommendations | Add Your Recommendation |
| View More Posts Ignore |
nataliecleeton
Thank you for this information. I hope someone can use it... I wish I had known this when I had my tensilon test. Although nothing bad happened, it was at my nuerologist office but no where need a hospital. I know when I was first diagnosed, I didn't have a clue that there may be risks. I totally relied on my doctor.... 
|
||
|
|
|||
| View More Posts Ignore |
That's really terrifying. While I was waiting for the blood test results, my doctor just told me to try taking mestinon. He said that if mestinon works, I definitely have it. I can't believe how many people take that Tensilon test. It seems like it should be a last resort when blood work comes back negative.
|
||
|
|
|||
| View More Posts Ignore |
I had no idea when I did the Tensilon test
at the neurologist office what the dangers were. He had me sign a release. Luckily, I didn't have a bad reaction. In fact, I felt like I could run a marathon. But, now that I look back on it, I would never have done it had I known the risks. That dr. turned out to be such a jerk and I'm not even sure that the result was correct. The dr. I have now is not even sure that I have MG.
|
||
|
|
|||
| View More Posts Ignore |
The tensilion test confirmed me in ER, the blood test did not.
|
||
|
|
|||
| Add Your Recommendation |
