MG: March - July

Well end of March, April and May went pretty smooth. Felt great, started to exercise. Work was good, life felt pretty normal. Started eating eggs and rice again. Tapered down to 15mg eod by Mother's Day and started to feel some eye issues. I struggled through it for three weeks but no improvement. I've had little reply or information from my neuro.

It is now my summer vacation July 2. Both my eyes are extremely difficult to open. Left eye is pulling outwards and extreme ptosis while the right eye is straining, moderate ptosis.
Returned to taking 30mg everyday of prednisone despite not hearing from my neurologist. Panick, fear, who knows, wtf?

Curent Meds: (Prednisone & Mestinon, starting CellCept)
• Day 3,4,5 - Lots of fear, crying, self-pity.
Hoping I bounce back as quickly as I did the first time around.
• Day 6 - left eye can flutter open when laying still and taking 120mg mestinon.
• Day 7 - eyes opening, vision blurred double. Lungs feel a bit labored. Walking in a marsh mellow world. Dishes feel heavy. Can't focus enough to actually watch a movie. (We think this flare was maybe triggered by Advantage-ing the dog. Guessing).
• Day 8 - Longest 8 days ever! 3.5yr old & dog bouncing off walls, Can't see, gone rouge with the meds, haven't heard from neuro (nasty superlative here!), vacation total crap (cant drive, cant see tv. no pool, no backyard camping, no county fair, no fire works, no beer while BBQing, no gardening) Worried about not returning to work Monday! Dog ate my hammock. No visual improvement.
• Day 11 - Visit to Neuro. Pred to 60mg for 5 days, then back to 30ng.
• Day 12 - Bad vision in AM. Rested. Starting CellCept. Re-reading my paleo entries, going bad to strict AutoPaleo Protocol. (See CellCept blog).

Survived the 5 days of 60mg of prednisone. Vision is but a wee better. Honestly thought I would feel better.

PREDNISONE TAPER:
• Day 1 tapering back down to 30mg.
• Day 2 tapering - major migraines, sweating, chills, laid out.
• Day 3 tapering - lead weights describe it best. Migraine. Feels like someone took an egg beater to my brain. This is my "this is your brain in drugs" moment. And I'm hating it. It's also a workday. Seriously want to die. Started eating completely clean--only veggies, fruit, poached salmon. No spices.
• Day 4 taper - Vision is getting a bit better. Migraine gone. Got to go to band practice after work, so I had something to look forward to. Feels like MG is in my jaws. Face feels numb in the mornings. Eyes won't totally shut.
• Day 5 taper - Eyes are little better. Double vision comes and goes. Thought I would be better along after all the meds, but it's slowly proving. So i'll take it. Wanting to start a juice fast.

JUNE is Myasthenia Gravis Awareness Month

June is Myasthenia Gravis Awareness Month.

While I probably should be sharing a blue ribbon or link to the foundation etc... Here is a video if me instead. I have Myasthenia Gravis. This video was taken at a show in San Francisco that my band BOTTOM played with the legendary DORO. I was just recently diagnosed with MG and just started taking two different medications to help me.

What you can't see in this video is that I am mid-myasthenia meltdown. Not a "crisis" that would send me to the ER to be assisted to breathe by intubation, but a meltdown--meaning I'm struggling at something I once found easy.

What you can't see in this video is that I can't look down, I can't fully see my hands. My arms, head, body and fingers, feel like I'm wearing a metal deep sea diver suit. My lungs are half of breath, my vision is blurry and double (to me the audience looks like a gel-ed over Salvador Dali painting), my friends helped me get my amplifiers on and off stage and I was popping pills before, during and after to get my muscles to work in efforts that I wouldn't end up in a myasthenic "crisis". What you can't see is that I just started taking prednisone and am experiencing the initial weakness brought on about 10 days into first taking the drug, this period last about a week before the steroid truly kicks in, before you feel better. What you can't see is that at this point, my husband was driving my around, taking me for walks in the park, my mom is in town helping me survive life, cook family meals, and take care of my 3 year old. I couldn't chew the over-cooked broccoli my husband made the night before. I asked my mom to stay 3 more weeks the day after. I am out of work on disability leave for three months at this point and really uncertain of how life will proceed from here.

Well, for this rocker, the show must go on. So here goes:

http://www.youtube.com/watchv=JenOkS9U6Uk&list=FLuzyO4wgm7V59oVDOBabc8Q&index=1

I am Sina from BOTTOM. I have iron lungs and thrashing axe. I am Myasthenic.

Med Alert: tapering to 15mg

Tapering again to 15mg... Will be here for three weeks. 15mg every other day.

Tapering hasn't been too fun. Very achy: knees hurt, pads of my feet are puffy, hands and face are swollen, wrists feel jam and just in bit cranky in general but dealing! Trying to stay focused and be motivated. Sometimes I just want to sleep all day---as if that could even happen.

Well, I'm getting off the drug-yuck! Just gotta do it!

Med Alert: dropping again!

My neurologist called today and we decided to reduce my alternating day of prednisone to zero! (so: 30mg, 0mg, 30mg).

It's a big drop but my vision is normal 100% of the time. I barely need the Mestinon except 3or4 times a day, which is a big difference from taking every 3-4hours like clockwork. Feelin' pretty good! Back to work, playing rock shows, able to chase my child at the park. A bit amped from the steroids but pretty good all in all. So I'm dropping tomorrow.

Current Daily Meds:
6am-30mg Mestinon
8am-30mg Prednisone & 60mg Mestinon
12pm-60mg Mestinon
10pm-60mg Mestinon
*more Mestinon if I have a BOTTOM show

Good Eats: St. Patty's Cabbage

It's St. Patrick's Day weekend!!! It's corned beef and cabbage time! And while corned beef is loaded with sodium, with the luck of the Irish it's typically paired with cabbage - a natural diuretic!!

Natural diuretic foods can do a gig and help stomp the horrible Prednisone belly bloat and moon-face. So enjoy a 'lil corned beef and then top your plate with the good stuff cabbage!!

In addition to assisting the body rid itself of excess water bodyweight, toxic compounds and poisons, natural diuretics offer us with some of the most vital components and supplements. Cabbage is especially rich with sulphur.

Other fantastic Paleo diuretic foods are asparagus, artichokes, beers, brussels sprouts, cranberry, dandelion, lettuce, melons, pumpkin, peas, parsley, watercress, and watermelons.

Why? Wtf? Why Not?

At the core, I'm punk! I am of Viking-kind (who will toss you back to gods for genetics). I don't believe in statements like "It's just bad luck", "No one knows why", "Possibly you're pre-dispositioned", but there's not way of knowing" or worse "Don't ask why?" The concept of 'blindly (pun intended) going along is not in my DNA.

As one who loves facts, data and a true believer in the "cause-effect" theory, I am propelled to question and seek answers even when the answers are not clear facts and data. Smart people ask "why?", "what happened?"

I don't believe you just wake up one day and suddenly have something like Myasthenia Gravis out of shear dumb luck. I've been in exceptional health all my life. I eat well, live clean, have an eco-conscious household and even green corporate events for a living. My biggest complaint last year was a bruise on my foot that derailed my exercise routine for a few weeks. So, hell yea, I'm gunna ask "why?" And "wtf?", while i'm at it!

My first visit to a Naturopath/Transitional MD yesterday was great, informative and a major step in the right direction.

Holistic practitioners are not afraid to ask "why did this happen? What happened?" Or say "Let's get to the cause, not just treat the symptoms." Getting to the root cause may not be as fast as Prednisone has been to cover my symptoms, but finding a more long term resolve with less detrimental side-effects seams prudent and smart.

So I started the detox program today that I received from my Naturopath. It is designed to clear microplasma virus and bacteria from the system. In December, I tested positive a microplasma pneumonia, however was told "never mind that, anyone can have that." Really? Then why test for it?

As the holistic drops don't conflict with the pharmaceuticals covering up my symptoms, down the hatch. I can see no reason why not!

Also attached are two books she recommended which I'm looking forward to reading!

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!

Follow Up: 4 weeks prednisone

Neuro appt went good today! Reducing prednisone every other day (to a 30,20,30 schedule) Yay!
Actually lost a pound, too! Go green smoothies, go!

Good Eats: Go Bananas

Potassium is needed to maintain the body’s fluid balance, is involved in nerve and muscle control as well as regulating blood pressure. Your body needs potassium in order to perform cell, tissue and organ functions; skeletal and muscle movement; and sodium regulation.

Potassium is the most prevalent electrolyte inside your cells. Being an electrolyte means potassium conducts electricity. Your body relies on potassium to conduct electrical impulses for your nerves and muscles to function at their best.

Good thing yummy bananas are chalk full of potassium. An average sized banana has 105 calories and about 422 milligrams which is (11% DV) 11 percent of the 4,700 milligrams adults should aim to get daily.

Benefits of eating potassium-rich foods:
• combat low levels of potassium which can worsen MG symptoms
• improve muscle contraction
• normalize blood pressure
• trigger the kidneys to excrete more sodium.
• combat the Prednisone side-effects of chipmunk cheeks (aka moon-face, Cushinggold) as steroids can impact your sodium and potassium levels.
• decease Prednisone risk for osteoporosis because fruits and vegetables -- which are rich in potassium -- also contain high levels of bicarbonate. If the environment in the body becomes too acidic, bicarbonate can work to neutralize it. This is important for bone health because too much acid can cause calcium to be pulled from the bones, weakening them.

Other great paleo sources of potassium: Avocado, dried apricots, cantaloupe, peaches, prunes, raisins, salmon, spinach, swiss chard, squash, sweet potatoes, white mushrooms, flax and chia seeds! An average sweet potato with the skin has 540 mg of potassium per serving. Raisins have 598 mg per 1/2 cup serving, while one medium banana has 422 mg of potassium.

So go bananas on potassium-rich foods!

Reference: sources-of-potassium

Prednisone - my new BFF!

Starting prednisone immune-suppression medication is no joke!

The pamphlet my doctor gave me states that "some symptoms start to feel better within 1 to 2 days after taking the first dose of prednisone while optimal effectiveness of prednidone is to happen at the 3-4week zone" (if the drug is to work at all). It also says that within the first 7-10 days weakness and worsening of symptoms can occur and last for about 6 days.
I am at the two week mark of starting Prednisone and Mestinon for treating Myasthenia Gravis.
So far I've been text book. My double vision started to improve in 2-3 days and like clockwork the weakness kicked in by day seven. Now my jaws, arms, lungs and other muscles were weaker, eating overcooked broccoli became a challenge and I had an episode of shortness of breathe which was pretty scary as it feels a bit like drowning. Luckily the Mestinon is quick to help. But still the week of weakening was pretty horrid.

To add to the fun, it made me super dopey, high (and not in a good way) and freakishly emotional. The world sunk like marshmallows under foot. I've was really emotional, scared, irrational, overwhelmed, dizzy, grabbing wrong words, even called my drummer the wrong name, and at times just wanted this crazy episode to stop even if it meant having the double vision back.
(Tip: tell your friends in advance that random texts and moments might occur and they are to remind you it's JUST the meds!) 
Luckily for me, my acupuncturist, husband, and friends all told me "just get through it! Survive". And so far I have. At the two week mark and I am hopeful that the light at the end of the tunnel is actually a light! (Other light options: an oncoming locomotive, a bolt of lightening or alien abductors.)

The Prednisone path ahead is no cake walk either. While not everyone will experience all the heinous side effects (e.g. osteoporosis, diabetes, weight gain, moon-face, insomnia or a hump) taking prednisone doses higher than 20 milligrams daily for longer than a week is addictive. YOU are now a chemical ADDICT as your body's natural production of adrenal hormones begins to decrease. This is called "adrenal suppression," and is an undesirable but inevitable effect of taking high doses of a synthetic steroid. Once this occurs, prednisone cannot be stopped all at once but must be slowly tapered down over several months to give the adrenal glands a chance to "wake up" and begin producing natural adrenal hormones again. Once you start taking prednisone longer than a week, you are like a junkie to it, committed to its command for at least a year. During this time you will pray to NOT experience the onset of a hump or whatever horrid side effect might fancy you.

Well for all this crazy, I really hope it works. I have come to terms that I must make friends with it energetically! Friends can't be friends if we hate eachother. So prednisone is going to be my pal, at least for now. So until I can say "TTYN Prednisone", I've gone paleo, am taking my meds as prescribed, and am getting acupunture to feel better!