Dear Doctor, Researcher, Television Producer,

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There have been at least 7 deaths – to my knowledge – related to Myasthenia Gravis, and the end of April is not even upon us.  So, maybe you’ll understand why I get angry when I read articles that misrepresent facts or watch a television program where a person hospitalized with Myasthenia Gravis is miraculously cured, giving its viewing audience the idea that in fact recovery is that quick.  I wish the writers had actually spoken to someone who had actually experienced an MG crisis in order to get a more accurate depiction.

Maybe you’ll understand my anger when I have an adverse reaction to a medication causing my mg symptoms to react moderately out of control and I call my doctor not once, but twice on two separate days, and I do not receive a return call.  Do you realize this disease can kill me?  Was it not clear when I stated my muscles were feeling like rubber that the respiratory muscles could be affected?  AND yet I’m dismissed?!  How dare you jeopardize my life! Do you have a medical assistant who is lousy at her job or have you simply checked out of yours?

When I called because I was going to be out of pain meds and you did not respond, the pharmacy decided to call, and you still did not respond. An entire week went by without a return call.  You left me to go through the weekend cold without any pain meds.  I am sure as a doctor you are aware how quickly withdrawal begins with opioid meds.  I was left to disrupt the on-call person because of your neglect.  What am I to think?

Articles I have read have indicated that those with MG are well managed living normal lives.  If that is the case how come 7 people have already died this year?  How come the Myasthenia Community is constantly praying for someone who has gone into crisis? How come there are so many doctors out there who are unaware of Myasthenia Gravis? Why are you not having seminars and sharing your information so people don’t have to travel state lines to get quality care?

Why would a doctor who is supposed to be knowledgeable on the care of MG pass the buck to a Dr. who has no idea of the disease or the treatment.  I would think a good doctor might consult with the other doctor and not leave that doctor to flounder in the MG abyss.

I will no longer trust another doctor blindly or the treatment they offer.  While receiving IVIg treatment for MG my blood pressure tanked, I had chest pain, nausea, and sweating; all signs indicative of a cardiac event. I get that.  The infusion team called my doctor and he told them to send me to the ED.  I felt fine.  No radiating pain and did not feel like this was a cardiac event, but I understand why I was going and complied.  Once in the ED, there was blood work and more tests, all normal, but the DR. wanted me admitted.  So I was admitted and put through the nuclear cardiac work-up and everything was normal. I was released.  Once home I looked up low blood pressure and IVIg.  Huh…..it and my other symptoms are side effects of IVIg treatment.  OK,   Like I said, I get they have to rule out a cardiac event, but if the doctor was aware of the side effects he probably would have said to the infusion team; “these are usually side effects of treatment, but lets rule out heart issues.” I don’t suspect he was aware.  AND, the low blood pressure issue was never resolved.  It was passed along for the PCP to deal with.  That was kind of him.

I will tell you though, my PCP’s office did call to see how I was doing, but the neuro office never called to see how I was and they knew I was scheduled for another appointment.  I think he checked out and that lack of action speaks volumes for him.

We (those of us with MG) will continue to fight this beast, we will continue to speak up against doctors who wrong us – even if it means being red flagged, we will continue to seek second opinions, and question what does not make sense because OUR LIVES MATTER.  Despite what is being told Myasthenia Gravis is a big deal – it is life changing and it is life taking.  So we will keep on fighting for ourselves and each other and for those who have gone on before us – Teal Warriors United.

Deb Correia 4/15/17 ©

 

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