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How to get treatment when your only positive test is the Tensilon test?

By December 2, 2014 - 7:20pm
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I was diagnosed by a hospital neuro specialist using the Tensilon test. I have since had negative blood work and EMG with the neuro I was referred to. He says that with the other negative tests I can't have MG and it is all in my head. The specialist has argued with the other neuro since I have had to be intubated and have had several hospitalizations due to breathing crisis.
I know that a small percent of MGer's have negative tests but how do we get treatment? I am lucky to have a PCP that is giving me the meds the specialist ordered but I need a neuro.

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HERWriter Guide

Hi mom2mba

Thank for your post and welcome! 

For the benefit of our readers, myasthenia gravis (MG) is an autoimmune disorder. The signal from the nerves to the muscles in blocked. As a result the muscle can not move. The muscles become increasingly weak.

Symptoms may grow more severe over time. This is a potentially serious condition. MG requires care from your doctor.

If your specialist has recommended further treatment for you (and has diagnosed you with MG) then I don't understand why you cannot get treatment. 

If one expert and your PCP have diagnosed you with this, you need to ask them to order treatment and to provide you with any treatments necessary. 

Please keep us posted! 


December 3, 2014 - 6:10am
(reply to Susan Cody)

Thanks for the reply. My PCP feels I need a neuro to treat the MG. The specialist does not see outside patients. I am still fighting to get treatment.

May 19, 2015 - 7:52pm
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