The MS Specifics

Born: Summer, 1973
Female
6'1" and proud of it.
DX with RRMS 2005. Been on a downhill slippery slope ever since.
Married to Hoodyup aka Andrew (God's gift) since summer, '03.

Symptoms and treatments from beginning to now.

Acronyms:
HH = Home Health
LP = Lumbar Puncture
Dr. = Doctor
GP = General Practitioner
neuro = neurologist
eye doc = ophthalmologist
MS = Multiple Sclerosis


2005 Summer
(still driving and working) noticed vision would decrease after standing or walking or being outside where it was warm. Couldn’t drive with this vision. Vision returned to normal if I sat down, cooled off, and relaxed.
Had one really bad bladder infection.
Nose bleeds.
Migraines that took the vision away temporarily.
Went to walk-in clinic for the vision issue.
Was referred to incompetent ophthalmologist.
She slapped glasses on me that didn't help and didn't refer me just sent me on my way.

2005 Fall
Numbness on right thigh. Went to a different walk-in clinic. Dr. ordered a MRI and referred me to neuro.
Noticed I started walking like a drunk person. No, I was sober.
Dr. called me at work to tell me I had inflammation in my brain. That's a fine howdie doo.
Went to neuro and got LP ordered with blood tests. Results where lesions in the spinal cord. Blood came back with decreased white cells.
DXed with MS.
Was severely bowel incontinent and heat intolerant at work
Took 5-month leave from work.
Neuro put me on Copaxone. Results were grapefruit-sized welts.
Quit it after 30 days.
Tried hyperbaric chamber due to quack diagnosis of Lyme--caused vision loss. Quit after 6 times for fear it would cause me to lose my eye site 100%. Tried antibiotics (doxy) and resonant light machine. No results. Found Lyme treatments to be futile and just a waste of time.
Experienced jolting stabbing/electric shocks in my neck for a month or so--2 or 3 times per day.

2005 December
Eye doc (different one than before) refers me to UC neuro-opthalmalagist. He throws me on IV steroids and admitted me into the neuro ward at the hospital because of fear of losing eyesight 100%.
Resident tries to put me on Prozac. Didn't happen.
Had another LP that went bad and had subsequent blood patch. Stupids!
Got another MRI--was their guinea pig because I had great insurance.
After 5 days of that I threatened the incompetent nurses (one last stick--if ya don't get it, I'm outa here-they didn't stick me--couldn't 'cause I had collapsed veins from their abuse) and left with Prednisone and no instructions on WHY to take a tapering off dose. Stupids!
Get this. After all the torture they put me through, the UC charged ME for my medical records. Even after giving them my insurance card when I first showed up there, when all was said and done, they had the balls to bill ME $65,000. I told them to bill the insurance and they did. Even after that they sent me a request for a donation. Unbelievable. I responded back in their prepaid envelope that I should be paid for the unnecessary pain they caused me, they're lucky that I'm not suing them, and that they got plenty of money out of my insurance and I'm not giving them a penny and gave them a generous F&*@ OFF!
Saw neuro when I got home. Symptoms from LP gone bad--sitting in a boat in the middle of the ocean feeling.
Neuro told me to take Avonex. I accused him of getting a kick back from the pharmies. I refused it. Being that I'm sensitive to meds, I didn't feel like going through the flu once a week or getting liver damage when there is only a low chance that it may or may noy help. I for sure would get the negative sige effects. Those outweigh the posibility of a maybe. I believe in quality of life. The Avonex side effects don't sound like a good quality of life to me.
That was the last visit to that neuro. He had no bedside manner, charged me $15 for every little tiny extra thing I needed and was an all-around classic jerk.
I have not been to another neuro since. Teaches at the UC and was there when I was there and knew I was there, but didn't even bother to check on me.
Went into adrenal failure (didn't take the prescribed Prednisone-didn’t know) at my mom's house. She took care of me for 2 weeks. I didn't care if I lived or died at that point.
Cut my hair from waist length to a bob. I always had fabulous, long blond curly hair--one of my better attributes. It became too much to handle and comb.

2006 February
Went to Half Moon Bay for the last time with Andrew. Had a freakin' good time. Was still walking, but couldn't make it to the Mavericks beach. Was the fattest I'd ever been--results of steroids.
Quit my awesome job.

2006 April
Went to Minnesota. I don't know how I made it there and back.

2006 Summer
Fell in the kitchen. ER doc said I pulled the major ligament on the inside of the knee.

2006 October
Bladder incontinence started. Was triggered by yet another bladder infection.
Sprained ankle while water sealing the barn. Was using borrowed electric wheelchair during summer.
Short-term memory started failing.

2007
Did nothing for MS. I lived my life and enjoyed what I could and bitched at Andrew to buy a new house.
Started to notice tinnitus in my left ear. Like 2 specific notes on a keyboard being played over and over.

2008 Spring
bladder infection
bladder incontinence
GP ordered brain MRI. 8 mm lesion found among numerous smaller ones.
Had to beat the GP over the head to do something about the discoloration starting in my feet.
Saw surgeon who ordered doppler test and another test on my feet and legs.
Results were nothing found.
Surgeon prescribed full leg compression hose. They worked for a while and then I stopped wearing after they trapped the blood at my ankles causing more pain.

March 2008
Bought new house. Had the mother of all nose bleeds at real estate office.
Was still walking with walker.
I had to desperately drive a stick shift vehicle to get the money to the bank and transferred on time by the closing date. Adrenalin allowed me to do that.
Cello bows took priority over me, so I had to do it as pissed off as I was.

2008 May
Moved to new house.

Summer 2008
Major head hair loss.
Decrease of walking. Still could use the walker somewhat.

2008 Fall
Thanksgiving dinner and Christmas dinner were both cooked by Andrew.
Parents sign me up for hot therapy baths. I refuse. Dr. Swank's book says doing that could cause irreversible damage in MS patients.

2009 Feb
Tired of the crap. Leg pain gets worse. Saw new GP. Started LDN 3 mg. LDN relieved leg pain. Went from 8 to 1 on pain scale with 0 being absolutely no pain and 10 being unbearable, but only when feet were elevated.

2009 March
Home Health started.
Ophthalmologist certifies me "legally blind". Optic neuritis in both eyes. Pale optic nerves.

2009 April
Beloved aunt passed away of cancer in may '09.
Saw her for the last time at GP's office. GP ordered electric wheelchair.

2009 Summer
Stopped walking altogether. Can't put feet on the floor for more than a minute due to severe pain and purple swollen toes even when taking LDN nightly.

2009 September
Had to cancel blood test and GP appointment due it being too hot (90 degrees at 9 a.m.) and I couldn't get into the car.
GP opened HH again.
Hubby had a break down and saw the local pastor and found thisisms.com.
I started reading and posting on thisisms.com. Good mental therapy for both of us. Where Andrew found out about CCSVI procedure.
Constipation is now common place. I eliminate once every other day if I'm lucky. Recently, I've gone 7 and 10 days without going.

2009 October
Andrew called Stanford
Later we talked to Dr. Dake.
Waiting for return call to go do scans.

2009 November
Medicare is still working on fraud claim I filed against the electric wheelchair supplier. A $19,000 electric wheelchair should get me out of the house and lift my legs to where they are not caused pain. It does not. Supplier sent me a nasty letter with the wrong zip (Stupids!) full of lies. Don't get me started on that subject.
Short-term memory loss so bad that if a thought comes into my head and I don't act on it immediately, it disappears forever.
I got leg braces that pinched my right calf and caused a bruise with a sizable wound.
A shower chair I bought online broke under me and tossed me onto the floor.
Remodel of the bathroom finished. Can't use it. No shower chair.

I'm now completely dependent on a manual wheelchair and am home confined.

I don't know what it is about family going behind my back and signing me up for therapies or procedures in which they think it will help. Apparently they think MS has made me stupid.
Anybody else wanna take a swing at me? I got long arms and big fists and I'll pop ya a good one.