The Big Reveal - One Year MS Clinic follow-up

1. My brain is still there.
2. MRI comparison between September 2010 and April 2013 is stable; no new lesions visible, brain mass remains unchanged.
3. Improvement noted in gross motor skills on my left side, though some deficits continue with my small motor skills on the left side.
4. No change in left side weakness.
5. No change in spasticity in my legs.
6. Improvement noted in nerve sensitivity in my hands and feet.

My neuro gave me a list of six (6) recommendations for my next year with MS.

These suggestions are based on the known best practices for people with MS and based on the findings presented last weekend at a conference of MS research academics. I think you will be surprised by some of them.

1. A multi-vitamin daily.
2. RDI levels of Omega-3 (animal based, not veggie derived) daily.
3. 1000 IU of vitamin D daily.
4. Mediterranean diet at least 5 days a week, 50 weeks of the year.
5. AT LEAST (bold AND underlined) 15 minutes of exercise - cardio activity - every day.
6. Get back on Copaxone until I can afford Tecfidera.

EDIT, 1:57 PM: I missed this part of my notes... My neuro did some balance testing and recommended I get a bike. A REAL BIKE, with just two wheels.

Thus ended The 2013 State of The Brain Address, with a hug and best wishes.

Of the few things I will miss about British Columbia, my neurologist is one of them. She's been amazing and awesome and I am so fortunate to have been a patient of hers. She will be taking some new patients at the MS Clinic. If you want to change, or you're looking for a new MS specialist neurologist in Vancouver, BC, I could totally hook you up).

So, it's nice to know that my disease seems to having taken another year off. It's been four years since I was diagnosed, so we'll see what happens in this next year.

BRAINZ! An Update

I had my 6th or 7th MRI since November 2008 today.

No contrast makes me happy. I don't like nursing an IV hole for three days.

My neurologist will give me The State of the Brain Address, as she does every year, on April 18.

My hope is she does not insist on referring me to the closest MS clinic to where I am moving. London, ON is two hours from where I'll be living and is NOT convenient. I would like a local neuro, and I'll get a referral to a clinic when we move closer to one.

***

One year ago I was flying to Chicago. I listened to Katy Perry all fucking day to celebrate.

***

I hope that dinner and some caffeine cures this tired I have. I have an art show to go to in a couple of hours.

Update.

Went for my three month follow up after starting Copaxone.

I have regained about 95% of what I lost during my first relapse. That's the great news.

My coordination is improving, I have more vestibular training to do in order to get the most out of yoga and pilates and some kinetic training to improve my cardio on the bike. My optic nerve is healing and my strength is improving on my left side. I can walk straight, walk on my toes and walk on my heels. I can stand with my legs together, arms straight out and close my eyes. I am sleeping 6 to 8 hours a night and still functioning in my day. I'm still having an unpleasant symptom that makes me feel awful about myself, but I'm not likely to get an answer on this until late this year or early in the new year because it's not something that is going to kill me. I have minimal spasticity remaining in my left leg. I am still getting nerve fatigue but she couldn't wear it out in a 15 minute test like she could last year.

I have to see the Copaxone nurse because some of my bruises have turned into spider veins which is not cool.

Since I don't have anything "interesting" going on, I won't get another MRI until A) I have a significant relapse or B) have one considered in three years. Which is good, because I don't see the point of doing an MRI on someone who is, for all intents and purposes, healthy.

I am really enjoying the Ativan. Really enjoying to the point where I think it might be wise to take the weekend off because this feeling of absolutely not giving a shit about anything can be quite habit forming. It's just so good.

And 30 of them only cost $11. Even without Fair Pharmacare I'd totally put the money out for that.

Following up with the Neuro in February 2011, after checking in with my annual poke n' prod at the family doctor and the MS neuro-psychiatrist in September.

Considering asking my family doctor to send me for a consult with a reconstructive surgeon because I would LOVE to get rid of these breasts of mine. My back, neck and shoulders are just killing me even with good, properly fitted bras. But it's still under consideration.

After those two appointments I will have a more accurate picture of what it is I need to do to save my own life.

But for now, I'm going to consider what to do this weekend since my house has been neglected for more than three weeks and that makes me feel awful about myself too.

I Less Than 3 my Neurologist

So, we're at the annual follow up/seeing how the mito worked phase of our relationship. We both agree that I am doing and have done remarkably well. Here's all the news that's fit to print:

1. I still have some residual optic nerve damage (but nothing to worry about because my vision is 20/20) and weakness, uncoordination and spasticity on my left side (but again nothing really to worry about because my gait is generally good and I haven't needed a cane in quite some time).

2. I am being sent to the treatment patient's group on January 15 to learn how to manage the use of needles/auto-injector because on February 1, 2010 I go on Copaxone.

3. This is, of course, if we don't decide to do another round of mitoxantrone (Novantrone) around that time because...

4. There's either a oddly shaped blood vessel where my spinal cord meets my brain stem, an old lesion that didn't show up very well on my non-tracer material MRI last year that is now showing up on my tracer material MRI now, or it's a brand new lesion.

If it is a brand new lesion I'm getting one more mitoxantrone treatment. My MRI is being sent back for "reinterpretation" given my neurologist's concerns. I won't find out about that until the new year.

Even if we decide to do one more treatment, my doctor is getting all my Pharmacare stuff set up for February so I can start then. If it's delayed another 3 months, we won't have to do the paperwork then I can just start.

5. I my disease burden has decreased minorly, and my MS doesn't really appear as individual lesions, though I counted 5 very distinct spots as we viewed it together.

So that's the long and short of it. I'm doing as well as really can be expected for someone with relapsing-remitting MS with residual deficits as a result of a profound relapse almost a year ago.

Not looking forward to needles, but if it keeps me from a relapse for even a day longer than I would've had without it, I'm okay with that. With help from Pharmacare, it shouldn't be too much of a financial burden either.

Also,

a day or two ago I posted this story, about the University of British Columbia (UBC) putting together a proposal to study CCSVI at the clinic where I am a patient. I asked my neurologist about it and she was interested, but cautious.

She was pleased to hear that I don't think that this is *THE ANSWER* but perhaps *an answer* and that I was still confused by what CCSVI doesn't explain. She did write in my file that I was interested in being a participant in any study that does happen - but she did caution me on a couple of things.

a) This proposed study has no funding, no protocol and no ethical review yet. It's going to be be March before they even know how many people they are going to let in, let alone the scope of the study.

b) A vascular surgeon at UBC who has done angioplasty on veins, but not the inner jugular or azygos (chest) veins, thinks that the possibility of stroke or stroke leading to death with the "Liberation Procedure" could be as high as 1 in 100. Angioplasty on other less dangerously located veins have a stroke/death odds of about 1 in 1000 to 5000.

Sobering odds, really.

So that is the State of Lori's Brain n' such for the fiscal year ending December 31, 2010. Profits and output have improved 100000000000000000000000000000000 times from this time last year.

Stuff and things.

Thanks to Cake Wrecks for the photo.


So, I got my new neurologist today, and it's a woman! And she is fun and a recent graduate and is supervised by this other woman who wears 3" stilettos and has a blonde Bettie Page haircut. I have the two most fabulous women in the neurology dept as my doctors! YAY!

Funny thing happened as my previous doctor was leaving the country...

I'm trying to get into this employment resource agency for people with disabilities and it requires a basic assessment of my condition and approval to work. Yesterday, in the hour before he finished at the MS Clinic he filled out my forms and had them faxed.

The agency called me to tell me that my doctor hadn't approved my return to work. This surprised me because he wrote a letter to EI saying that I was ready for regular benefits about two months ago.

She then informed me that I've had MS for 6 years, I am anorexic, on anti-psychotics, have no mobility issues, but I can't read, write or talk properly.

This is all very much news to me. I think he may have got me mixed up with another patient. So as a result I got to meet my new doctor at the clinic today. We filled out the forms properly and I had the office staff at the clinic re-fax it.

I'm still weirded out by his confusion in my paperwork, but I guess that it doesn't matter now. He's gone back to Germany, and I have a bright, shiny new neurologist!

This means that I'll have a reason to leave the house soon. Working with a job developer and employment counsellor will be good.

I changed up my Wellbutrin dose to both pills at 9 AM and I'm sleeping better. No more than 6 hours at a time, but that's definitely better than the 3 or 4 I was getting before.

Additionally, I've been following the craptastic Republican stupidity about how the US Congress' health care reform bills are "Canadian-style" health care.

IT is NOT even close. In fact, it is the kind of care that Canadians have been fighting against for about 10 15 years. Two-tier is a bad idea, but I guess in the case of Americans beggars can't be choosers, right?

The Canadian system isn't perfect, but I've never waited for anything I've ever needed. The system is run on triage and the sickest get service first. I have MS and I've had an MRI bumped because someone with a brain tumor or something needed it more than I did. I'm cool with that, because I know that person was sicker than me and didn't purchase his/her way to the front of the line. I got in a few days later.

If I had to pay for every health service I've received in the past 10 months I would be declaring bankruptcy. I had no "employer" insurance with my last job. I have had 3 MRIs, 2 MUGA scans, an EKG, an EEG, seen 5 specialists, had 4 rounds of a chemotherapy drug, three bags of steroids and have used the services of the relapse nurse, social worker and physiotherapist at the clinic as well as two visits to my family doctor to get some of the side effects dealt with. I either wouldn't have got these tests/treatments/supports or I'd be in debt up to my ancestors ears as an uninsured person in the US. If I had even the most basic of coverage in the US, I'd be swamped with bills.

I lost my job and the ability to work because of MS. I'd be destitute if we were in the US, and every DAY I am grateful that Joe moved here instead of me moving there.

Single payer insurance is the way to go, but I doubt that the culture of the US will allow them to get there. The system is too race and class based for white suburban people to allow poor people get the same care they do. The place is so Calvinist it makes my head spin.

I am sure there's more, but this is long and offensive enough.

Following up.

I met with my neurologist yesterday.

I have measurable improvement, I'm to stay on the anti-depressants & I can book my next mito treatment.

He thinks that we might be in a position to hold back the sixth treatment as an insurance policy if I get sick again. We'll look at me again in November. He seem disinterested in how I was feeling but very interested in the spasticity in my left leg.

I just lost feeling in my right thumb and then it came back after a few seconds. It's when stuff like that happens that I realize that I can never have a normal life, because there's constant reminders of my condition. My body won't let me forget I have MS.

Chang gave Joe and me the plague and it's not cool. I've got to be over this shit before I can get my next round of treatment!

Codeine cough syrup FTW!