How do you grieve the life you had before Myasthenia Gravis?

[Community Member]

Oh my gosh, MG took everything from me. MG came on fast and took me down quickly. No one could understand me, my speech was garbled. I couldn’t tie my shoes or button my shirts. I aspirated on food so I dropped 40+ pounds in weight. And I was a Licensed Nurse, Independent and I loved my job. So, my life as I new it, was gone. Financially, I never imagined that a person could be so poor and somehow survive.

The Neurologist I had at Kaiser, was a terrible Doctor. He dragged his feet and did nothing. My 3 friends rotated days to take care of me, or at least they were present.

So, I had Vitiligo, Alopecia, and Hypothyroid all autoimmune climbed on board. And the Doctor did nothing.

I demanded a MRI, He complied. But he never reviewed the results. But he told me that I could go pick up the MRI films, radiology report etc.

The woman at the counter read the Report, it said. “Large Thymoma invading lymph glands REACT FAST, LAST RESORT!

So I had heard of a Neurologist that specialized in MG. Fearing for my life, I called his office and pretended to be a nurse at Kaisers Neurology Dept. to refer a patient with MG to them.

Being a nurse this was easy. But a couple of hours later, I felt bad for doing that. So I called again and spoke to the same woman. I explained what the MRI Radiologist wrote & that I was a Nurse.

She replied, “Well let’s get you in here, sooner. How does tomorrow sound?

I was having a thymectomy by the end of the week. The Nurses would whisper in my ear, Relax, we are gonna take good care of you. You are one of Us!

(It’s been 20 years and it still makes me cry when I speak of those days)

I didn’t know a thing let alone how to apply for SSDI, WELFARE, CAL FRESH, MEDI-CAL. And MEDICARE was a topic I’d hear my patients discussing with Social Services.

I must apologize, for going on and on.

I was so depressed today. And I just couldn’t pull myself out of it. But being able to share with someone who understands, really does help. Thank you so much. I feel a lot better.

I never knew that we should grieve our losses from MG. Until I seen it posted a couple of years ago.

Just not sure how to go about that.

I wrote a Book, dang it lol

[Community Member]

Diane, don’t ever apologize for having a bad day here. <3 We all get it. I get it. I was a medic in the Army. I started having symptoms while deployed to Iraq. It took everything from me as well. The army was supposed to be a career. I was studying to go to med school. I wanted to do medical research on why there was a higher prevalence of ALS in Veterans compared to the rest of the population. It took 7-8 years of cobbling various symptoms together before I was finally given a working diagnosis of MG. I too had an enlarged thymus. My neuro at the time drug their feet until I went to the patient advocate at the VA and demanded to go see a neuromuscular specialist that was a few hours away from me. After she saw my scans and med records I was having a thymectomy within a month.

So I get it.

I’m glad you’re here.

[Community Member]

I too am a Vet. VN 1967. I never heard of VA helping Vets. I still have that problem. I had Bladder cancer, Thyroid cancer, balance and other issues. THEY want PROOF?? My docters that treated me are DEAD and the hospitals gone. What the ?

[Community Member]

It’s annoying. It’s bad enough trying to”slow myself down” to conserve my energy but, it affects my favourite hobbies including playing my bass guitar and playing video games. My reaction times are slower.

[Community Member]

I had to give up playing with my Grandchildren ! Sad.

[Community Member]

Sorry to hear that. How many grandkids do you have?

• This reply was modified 3 days, 5 hours ago by  Community Member.