MG Dx (& the first four months):

The Journey to my MG Dx (the first four months):

10/30 Top of the world! Halloween bday party for my son. Pumpkins, homemade ghosts, spooky decor, bouncy-house, hand-painted tombstones, skeletons! Spiderman Cake! Friends & Fun! A normal day. I also just released another album with my band, BOTTOM. Work life was FINALLY (after a really long year) at to the point that I felt awesome about it! Life was on target and in all purposes looking up!

NOVEMBER 2012
11/4 (My son's actual birthday) Went running, had Bday cake with the babe and husband. I was fine!
11/5 Woke feeling flu-ish, sand in my eyes, heavy eyelids, felt ill like I was giving up caffeine.
11/9 Thought I had ear infiction all week. Went to work related dinner event, had difficulty seeing the address number posted for the restaurant. (Quince in SF---absolutely fabulous btw!!)
11/12 Told to squirt saline up my nose by on-call doctor. (This is actually comical now.)
11/19 Eyes feel chameleon-esque.  Hard to move eyes side to side. Eye pressure, pain. Major pain in left side of neck/shoulder. Dizzy.
11/23 Turkey day. Dizzy.
11/26 Saw on-call doc. Was given z-pack for sinus infection. Helped sinus, but nothing else. (This actually probably kicked me fully into MG symptoms).

DECEMBER 2012
12/1 Produced corporate gala at California Academy of Science. Dizzy, double vision, light-headed. Continued to work all next week. It's the busy season.
12/8 Produced corporate gala at NobHill Masonic. Again, dizzy, double vision. Disoriented.
12/10 I needed a specialist!! My vision was really bad now. Called in sick from work (will remain out til March.)
12/11 AM-Saw an ENT. Tested with perfect hearing (which is impressive for a metal guitarist). ENT suspects atypical ocular migraine.
PM-See on-call opthalmologist (mine was out for surgery). Doctor turned off the lights, turned on the tiny pinlight "follow the light." He turned on the lights and looking very pale said "I'll be right back". He returned with a number to Dr Horton at UCSF. "he the is the best doctor if you have something like you possibly have" though he wouldn't say what. "Typically takes 3months to see him, but I called and he'd like to see you tomorrow." John and I assumed I was dying (tumor or god knows what). Yea, we went there. It was a LONG night.
12/13 See Dr Horton! He calmed us, scheduled MRI and said he'd "be able to give SMART answers quickly after he sees the scans."
12/14 GP connects me with Neurologist and says that one of the possibilities they are looking for is MS.
12/17 MRI
12/19 MRI results normal with exception of one small flare in the corpus callosum (but anyone can have just one). Neuro-opthalmologist says he believes it's not MS. Ptsosis right eye begins, yet is undetermined.
12/21 General Neuro continues checking for MS because of the one flare. Sets up Spinal Tap & Visual Evoked Potential test. More blood work.
12/20 Inspired by Dr Terry Wahls' story. Food as Medicine, Minding My Mitochondria! (read it!). Start Wahls Way diet.
12/24 John gives me NutriBullet as gift! Awesome kale smoothies in seconds!!!
12/25 Christmas
12/26 See regular opthalmologist. Visual field is intact.
12/30 Play BOTTOM show with double vision.

JANUARY
1/5 Bloodwork: More tests. Thyroid re-done.
1/10 Visit with GP, thyroid results are fine.
1/12 Play a BOTTOM show with severe double vision.
1/17 Visual Evoked Response Test
1/2O Neuro-opthalmologist mentions Myasthentia Gravis as possible differential.
1/21 bloodwork: done to check thymus
1/22 Spinal tap - cancelled
1/25 Brthday lunch with girlfriends!
1/26 Right iris is drifting. Ptosis. My face looks asymetrical like a Picaso painting, sliding down my face. Vision feels like a melting Dali painting.
1/28 Lab confirmation positive Antibody ( AChR Binding Ab, Serum 30.40) for Myasthenia Gravis.
1/29 Mom arrives. I need help that only moms can give!

FEBRUARY
2/1 Follow up MRI - brain and spine
2/4 MRI results normal. Spine prestine. One flare unchanged.
2/6 First acupuncturist session.
2/9 Acupunuture.
2/11Neuro follow up after Dx. Start taking Mestinon. 3xDaiky 60mg
2/13 Acupuncture
2/15 AM-First appt with Sub-specialist MG Neuro at UCSF. Prescribed prednisone 30mg daily.
2/15 PM-CT scan of chest for thymus
2/16 Acupuncture
2/19 Attempt to return to work, not ready. Still double vision looking down.
2/20 Feeling prednisone break in inital worsening. Super high, dopey. feels like marshmallows unfoot.
2/21 AM-Find out there is no tumor on thymus. MG is now in my jaws, throat, lungs and hands. Feeling bit terrified.
2/21 PM- Play BOTTOM show with DORO, with norovirus. Rocked it. Mestinon to the rescue!
2/22 Asked my mom to stay longer. I still need mom!
2/23 Acupuncture. Prednisone initial break in zone is really intense. Losing my marbles in fear of potential drug side effects. Feeling high, floaty, surreal, emotional. Think maybe double vision is less traumatic.
2/27 Acupunture gives relief to prednisone evils.

MARCH
3/1 Gone fully Paleo! starting one month clean food month to test for food sentivities. (NO grains, legumes, dairy, eggs, nightshades, seeds or nuts!)
3/2 Coming out of the intial 2 week prednisone adjustment zone. Feeling less insane!
3/3 Hair sample kit mailed to Doctors Data, Inc for environmental toxin exposure results.
3/6 acupuncture.
3/6 Neuro-Opthalmologist follow up
3/7 Sub-specialist MG neuro follow up. Now on 30mg,20mg,30mg prednisone alternate day schedule. Insomnia, puffy-face, belly bloating, hump side-effects are started. Vision is better, i can function but already concerned by prednisone side-effects.
3/10 acupuncture
3/11 First appointment with Dr Marcey Shapiro - Transitional Medicine MD.
3/18 Planning to return to work!