a little bit of history I have hypermobile ehler danlos syndrome, Postural orthostatics tachycardia syndrome(pots), gastroparesis, migraines, occipital neuralgia and seronegative MG.

I was diagnosed with mg after ruling out ms, cidp, and Guillan-barre. Pots was already ruled out since pool pt I had done had just made it worse and no improvement. They did blood work to check for for achr antibodies and musk-both negative. the emg was negative and I didn't realize at the time that it wasn't a sfemg. I was diagnosed based off a very positive response to mestinon.

After dealing with communication failures with my neurologist and his team during a bout of covid(I'm vaxed) and a possible crisis or flare that sent me to the ER; I went to a neuromuscular MG specialist.

Who has done nothing but dismiss and gaslight me. He's blamed my symptoms on my pots, even though it was ruled out. Re-ran blood work, but not LRP4. Had me do a sfemg which I did today.

which leads me to the questions I have:
Are they supposed to dig with the needle?

Aren't they supposed to remove the needle and re-insert it multiple times? They only took 2 readings, 1 on my forehead over my right eye and another on my forearm for my hand.

The individual doing it told me it was normal, that I didn't have MG and to be thankful it was just pots. It seemed very unprofessional.

I didn't tell them any of my medical history, but they are apart of the medical office. Should they have had access to all of my records? Or did the doctor impart his bias?

Thanks for reading!

Glad you came and posted. I thought of my first needle test so long ago . There is a great deal of variability in testing and just the basic neuro exam in my experience. I was very fortunate to have brilliant and kind providers at times including one Pulmonologist at Mayo Clinic in Minnesota. My case is very unique and confusing so I forgive Mayo but also see limits to testing . Sculptor 44.

Welcome twirl.

My doctor was so brutal with these studies 30 years ago, that I screamed and cried through a head to toe study. I had 3 children and childbirth was nothing in comparison pain wise... They left me with severe widespread burning. They thought I had CIDP...

I am trying to find out what is wrong with me, since I now have LRP4 antibodies...

Yorkiemom