Out of an orange colored sky

I walking along, minding my business....when crash, bam, alakazam!

Ugh. That's how this stupid disease seems to work. I was feeling really good yesterday. I actually had a lot of energy (for me) and nothing was working out of sorts. My balance was good, nothing was numb and I felt pretty good all things considered.

Today I woke up feeling the same way. In fact, I didn't even have my usual morning stumbles where I try to regain my sea legs after a long nights rest.


Then, out of the "orange colored sky" the MS Girdle was back with a vengeance. I was literally walking along, minding my business when I doubled over and my breath was knocked out of me. It feels like someone is trying to cut me in half with an ace bandage just under the bottom of my rib cage.


It seems to ebb and flow in severity, but I am totally numb from ribs to belly button, front to back. Why today? Why right now? Who knows. Apparently those nerves have decided to short out for the time being. I just wish they wouldn't short so hard when they decide to go out.

Stupid holes in my head.

Injection Complete

I did it.

I successfully injected my first dose of Avonex.

I am relieved to finally have this part of the journey behind me. I have been thinking about it for the past five months and after all that build up, I am glad to be moving forward.

(Darci, this part may be more than you want to know and involves needles. Feel free to skip ahead two paragraphs.)

So it hurt. Not the needle going in. In fact that didn't really feel like anything. Just a little pressure. Psychologically, it was monumental! The needle is HUGE!!! In fact, the needle is just as long as the pre-filled syringe is. An inch and a half. There was a moment where I thought for sure that I was going to hit my femur before I got it all the way in. Apparently the thigh is meatier than one would think.

The part that hurt was actually pushing the plunger. The Avonex burns going in and pushing faster makes it burn worse, so it is a slow process. The dose itself is very small. Only 30 mcg. I would estimate that to be about 1/2 a teaspoon or less? I will try to find out for sure.

As for the dreadful side effects that I was warned about? That part was true but not as bad as what I had heard. So far though, the severity of my symptoms is mild to moderate. I have a headache and feel achy all over in my joints and muscles. I am also exhausted, but am having trouble finding a comfortable position for more than 30 minutes at a stretch. I see a lot of little naps in the next 24 hours. I have been up and around the house. Taken a couple of short naps and watched a movie with a girlfriend who came over to hang out with me for the evening.

All in all, it has been a better day than I had hoped for. I have wonderful friends and family who called to see how I was doing, came and hung with me so I didn't have to feel lousy by myself, brought me lemonade cause it sounded good and most importantly; prayed and prayed and prayed for me.

Thanks to all of you. I LOVE having you on my team!

Injection Day

So tomorrow is the big day. The day I have been waiting for, dreading, anticipating, needing for the past 5 months. Tomorrow is injection day.

I have watched videos on youtube of people doing Avonex injections. I have read about it. I even watched the informational (propaganda) piece created by the Big Pharma company that created Avonex. So I feel like I am in the know. I am prepared for the injection. I am confident that I can do it and that the injection will not be that bad. After all, I have been self injecting Vitamin B-12 for months now.

I also feel like I am about to step off a cliff. Tomorrow feels like a milepost. A bench mark. The beginning of the end? I don't know.

Here is what I do know. I will do this injection every week. For. The. Rest. Of. My. Life.

...........

That is the part that messes with my head. The rest of my life. I am committing to inject myself with a synthetic drug that will make me feel like crap and HOPEFULLY get my body to stop munching on my brain. And I will do this FOREVER.

Of course a cure could be found before then. I would LOVE that! I am not holding my breath that a cure is going to come about in my lifetime though. MS is a weird disease and it doesn't manifest itself in people the same way. That makes it not only hard to treat, but even harder to fix. Especially when they don't even know what causes it at this point.

Anyway, I am nervous about tomorrow. Not because it is going to hurt (it probably will a little) and not because I am likely going to be feeling like I have the flu by tomorrow night (although my mother is praying that I be be an anomaly to the statistical average) and not because it could cause me some kind of serious harm to take it (it could, but its REALLY super unlikely).

I am nervous because I am about to start treating this disease that I can't see, that won't behave and act predictably, and once I start, there is no going back.

And yet I am blessed

I see a lot of doctors and medical providers these days.





I have my Primary Care Provider (PCP)


I have two MS Neruologists


I have a Hematologist


I have a team for my study at OHSU


I have a counselor





I love all of them. Okay, most of them. I would love my Hematologist more if I could take him off my list. He is a VERY smart man when it comes to blood disorders, and if I ever had one that required care and treatment, I would want him to be the one treating me!



Sometimes it sounds like I should be on deaths door because if you ask me what my schedule looks like, it seems I have a doctors appointment every day! I don't, but I am running from one provider to another regularly.



My team at OHSU has been fantastic! When I have my monthly appointment up there, I am met at the front desk and off we go to the lab for blood draws and urinalisis. The phlebotomists are even starting to know me by name. Which is nice, since they are also starting to learn where my veins are.



I now joke with the research manager for my study about my lousy veins. He always says he is going to do my draws and then chickens out and sends me down to the lab. I told him he has to do it at least ONCE before my study is over. He is just afraid he will have to do multiple sticks. And I keep telling him that EVERYONE has to do multiple sticks on me. Even the lab.



The nurse manager for my study is great as well. She and the research manager are in constant contact with me about my apointments, my drugs and any reactions, how I am feeling and if my symptoms have changed. They also escort me around the hospital for everything, waiting while I get labs done and making sure I have everything that I need. I am sure this is not normal care for the average patient, but aparently being in a study makes you a VIP patient. Crazy.



I just love that everyone I have come in contact with has been so kind, caring, and willing to listen and explore options of care. I know that I have been very lucky to recieve care like this and blessed to recieve this kind of care at no cost.

Sensible

I love shoes. Adore them really. In my book there has never been such thing as too many shoes. At one point I think I may have had more than 30 pair. (Not including another 10-12 pair of flip flops.) Because I love shoes so very much, I have always gone for quantity over quality because lets face it, Manolo's are hot but so NOT in my budget! Payless Shoe Source and Target were two of my favorite destinations for cheap yet chic shoes and I had many of them. Comfort was never my concern, as long as I didn’t have blisters after the third or fourth wearing.

Arch support-who needs it?
Quality construction-does it really matter?
Super high heels-why not?
Cramped toe box-if it’s cute, who cares?

And of course, my favorite shoe was the flip flop. *sigh*

The flip flop. No socks required. Toes sporting fresh pedicures. Sparkly straps and bamboo soles. HEAVEN!

And then my neurologist took a look at my perfectly pedicured feet, shod in the flip flop sandal de jour and said, “Those shoes are not going to work.”

*blink, blink, blink*

“Why?” I asked in a bit of terror and indignation.

She went on to explain that because of my current balance issues it was not only a safety concern to be walking around in “unstable” shoes; it was doing me no favors in the long run. I was an accident looking for a place to happen. Additionally, because my gait was already compromised, wearing flip flops, unstable heels and shoes without support were a danger to my continued health and well being. Finally, wearing sandals and other shoes that did not provide coverage over the top and sides of the foot, promoted my toes and arches working really hard to keep the shoe on; therefore compromising my gait further.

She then suggested that I start wearing “sensible shoes”

*cue the crickets*

My grandmother wears “sensible shoes”. Really old ladies wear “sensible shoes”. People in nursing homes wear "sensible shoes".

This is my idea of a “sensible shoe”.

See. Not cute.

I spent a few weeks resisting. I would just prove her wrong. I could still wear cute shoes. And flip flops. I was NOT giving up the flip flops!

And then I twisted my ankles. Both of them. In the same week. Not bad enough to sprain them. Just make them sore. Then I tripped a few times. I almost fell a few times. I noticed that I was working really hard to keep those darn flip flops on my feet.

So on the VERY off chance that the neurologist might be on to something, I wore tennis shoes for a week.

My balance improved. Significantly. I didn’t have to concentrate so hard on walking from point A to point B. I stopped rolling my ankles. I didn’t trip as much.

*sigh*

I hated to admit it, but she was right. The cheap shoes were causing me grief.

So with much reluctance and bemoaning, I cleaned out the closet. All the cheap yet chic shoes came out. Anything with a stiletto heel? Gone. No arch support? Out. Cramped toe box? See ya.

And the flip flops? Okay, so I haven’t removed them from my closet yet. I love them! But I did stop wearing them. By next spring, I will pitch the worn out ones and give the rest to one of my girlfriends that has feet my size. I already sent the rest of the cuties home with her. (Kelly, I knew if anyone would give them a good home, it would be you!)

So here I am walking around in “sensible shoes”. No, I do not find most of them as cute as some of the unsensible shoes that I wish I could wear still. But, there are some REALLY cute “sensible shoes” out there that even I would be caught wearing. And the added bonus? I don’t have to work as hard to keep from tripping over my own two feet. That is far cuter than falling flat on my face!

*And for those of you who know of my shoe love, no; I did not have to give up ALL of my cuties. I still have my black boots (Aerosole, quality construction, chunky heel, not too high, room in the toe box) and my Pink Pointy Toe Princess Shoes (NYLA, 1/4 " heel, room in the toe box, VERY broken in. Also, you would have to pry them out of my cold dead fingers! I have an unhealthy attachment to that particular pair of shoes!)*

Pretty Good

So how are you doing? No, REALLY.

I get that question a lot. My answer is most likely to be "Pretty good", which is followed by the phrase, "No, REALLY".

Really? I am doing pretty good. Most days. Every now and then I have a day that stinks in relation to the MS. Other times I have days that stink in relation to my job, or my tenants, or my co-workers, or my spouse. What's that? You have those days too? Wow!

Everybody has days that don't qualify as even 'pretty good'. Funny thing, I have gotten 'pretty good' at reading if the question "How are you doing?" is in relation to life in general, the MS or just polite conversation.

As for the MS, most days it doesn't impact my life so much that I can't do what I need to do. I have learned what things are difficult for me and have adapted. For example, I know that my balance is usually questionable to some degree. This means that I hold the railing on stairs. I watch where I am going on uneven ground. I wear sturdy shoes.*

My balance is significantly worse if I am tired. My adaptation to this has involved not doing laundry when I am tired because I have to carry stuff down to the basement and don't have a free hand to hold the railing. Also, if I am really tired and feeling balance challenged, I am not going to climb a ladder. Or Mt. Everest. (Not that Everest was on my list of things to do!)

When the MS symptoms flair up, I probably won't say that I am doing 'pretty good'. I might tell you that things are going well, but I am having a rough MS day. That might mean that I am having vertigo or maybe my feet have been numb all day, making it hard to walk. Does that mean I can't get on with my day? Does it mean that I have to stay home and do nothing? No. Not at this point anyway. And I hope it never does. It just means that I have to work around it.

When I have vertigo, I don't drive unless I have to and then only on known routes and not at night. When my feet go numb, I might walk with a bit of a limp (the right is worse than the left) and if it is really bad I will use one half of an old pair of crutches to get around the house. Adaptation.

So really, I AM doing pretty good. No, life isn't perfect. It wasn't before my diagnosis either. And I don't expect it to be perfect any time soon. But I am pretty good and that is good enough for me!

*If you know me well, you know that I have a thing for shoes. Tomorrow I will tell you about one of the saddest things that has happened thus far in my MS journey. It involves my shoes. It was and is a little tragic. And I was and am a little melodramatic. Especially about my shoes!*

Stay tuned for more on "What's Eating Her Brain?"

Hello there!

As I am sure you have figured out by now, I got a little sidetracked in blog posting land. Things have been busy and ever changing in my world. But, who doesn't feel that way?

I wanted to get started blogging regularly again, and thought I would highlight some of the things I plan to talk about in the next few days and weeks.

• Drugs and how they are (or aren't) working
• New and bizarre symptoms plus the disappearance of some of the original ones
• Job changes, additions and subtractions
• Trying out assistive devices
• The Clinical Trial
• Doctors, Nurses and Assistants. Oh My!
• Insurance Companies & Health Care Reform
• Shoes. A fond farewell to the flip-flop and sexy heels. *sigh*
• Avonex Injections
• Fear
• Hope
• Trust

And anything else that may come up from your questions or from my daily life.

Hope you are all doing well and that this post is the begining of more regular updates!

When I think about it I stab myself

Well, I went in yesterday and learned how to self inject.

Dhun-dan-da!!!

And it wasn't as bad as I thought it would be. I know! Pretty amazing. Especially for a girl that used to get all light headed at the thought of a needle. It didn't hurt any worse than say a mosquito bite when the needle was inserted (I am using the smallest insulin needle I could get my hands on) and the injection itself felt like nothing. I have had injections in the past that burn or are cold going in, but this was nothing.

As for the alleged energy boost that the B12 would provide? I've got a whole lot of nothing to report in that department. I have a nasty head and chest cold at the moment and I have even less energy than I normally have, which means that I feel slightly better than death warmed over. I have to continue injecting every day for a week, then once a week for a month, then once a month indefinitely. Hopefully after I get rid of this cold, I will notice the energy boost from the B12.

In other news, I got the call from OHSU on the clinical trial that I have been waiting for. I go in next week for my screening appointment to see if I am a good candidate. Mostly its a lot of questions about symptoms, some motor skills tests and a chest x-ray. Which considering how much I have been hacking and wheezing with this cold, could be humorous. At times I have coughed so much I am wondering if I am going to bust a rib! Hopefully I will be feeling a lot better by then and not coughing so much I feel like my spleen might get expelled with some other organs the next time I start coughing.

Did you really have to stab me in the back?

Remember how I was B12 deficient and then I wasn't?

Well one of the things we saw on my spinal tap was a B12 deficiency. I kept pondering this discrepancy and decided to call my PCP's office to see if they felt like I should do B12 therapy since 2 of 3 tests indicated that there WAS a deficiency. Come to find out, ALL 3 tests indicated that I had a B12 deficiency.

Ah yes, the results given to me for the MMA test were wrong. The test results that led me to have more blood work and ultimately my spinal tap. *ahem*

I am a little disappointed-irritated-annoyed-frustrated by that information. I am glad I have the right info now, but I could have done without the additional testing. I am going into the doctors office today to learn how to self inject the B12. (Lucky me!) I am hoping it helps quickly to put an end to the fatigue. I will have an update later today on how that experience goes.

In the mean time, off to my new job. Yes, you heard correctly. I have a new job. I am going to be the manager of an apartment complex and today is my first day. I am still keeping my other job, but changing how I do it. That is another post all together, but I will fill in those details soon.

I have been blessed

It has been beyond hot here for the past week and from the sounds of things, the rest of this one. When the forecast of 100+ days popped up, I became a little concerned about my symptoms spiraling out of control. So far this summer we have had very few hot days, but the ones we have experienced have sent what is an annoying symptom on an average day to crisis mode on a hot day.

For example; my balance isn't stellar on an average day. I have to be extra careful on stairs and on slippery or uneven surfaces. When its over 90 I end up wobbling around like a drunk sailor unless I am on a flat, dry surface. Needless to say, I was concerned about how I would handle my second floor apartment after 5 days of 100+ heat.

Our church used to have some of those portable A/C units that you could vent out the window. I was hoping we still had them in storage and called our church secretary to see if I could borrow one for the summer. Apparently we had sold them when we moved out building last year. I figured I would need to make due with fans and stay at the office as long as I could. I was about to be surprised.

Our church decided to buy me an air conditioner.

Buy me one. My very own. No strings attached. It was purchased for me simply because I had a need, because my church was able to fill that need, because they love me.

I have been blessed.

So I might be a little off. Off label that is.

Sorry for the lack of current info around here. Life has been throwing me some additional curve balls outside of the MS ball that I already had in the air. I will fill you in after I figure out exactly what is going on, but for now know that the things that are in the works are potentially hugely impactful for managing my symptoms and moving forward with my life.

All that aside, I had my follow up visit with the neuro yesterday. She didn't/couldn't give me a clear answer about why we did the spinal tap. Suffice to say that several of the protein strands they looked at are outside of normal range and are indicative of an active immunological disorder. I am pretty sure we already knew that, but now we know it even more? Who knows.

My neuro still wants to get me into a clinical trial. The one we were shooting for is temporarily on hold due to an ornery gatekeeper at the Primary Investigators office. I threatened to help her get out of the gate (since that is what I do for a living) but the neuro just laughed and said they hoped to have it resolved and ready for entrance exams by the middle of August. If not, she wants me to "bite the bullet" and start the Avonex without the financial support of the clinical trial. Ummmmm, yeah. If anybody knows where I can find $1,100 for my out of pocket cost for the first months treatment, be sure to let me know!

The best news that I got from her was that she was willing to write me a script for the anti-fatigue drug that I have been wanting for two months. I may or may not have gotten my hands on said drug a month ago and it may or may not have made a HUGE difference on the day that I took it. Now we just have to get my insurance company to pay for it. They aren't excited because it is pricey, not generic and we are asking for an off label use. In other words, the FDA knows that it helps with fatigue. However, they have only approved it for use in fatigue in shift workers and narcolepsy patients; not MS patients. Why that matters? I don't know. Fatigue is fatigue and I would like to stay awake for more than 4 hours at a stretch. And I think the people on the road with me would appreciate it too!

Here is to being off label!

Good Grief Charlie Brown!

So I got the results of my spinal tap back. It was positive for the proteins that you can sometimes find, in some MS patients, some of the time. How is that for definitive?

The M.A. who called to give me the results only had about 20% of the info she needed to answer my questions (not her fault, just the way it was) and ultimately we decided that I should just come and visit the neuro again.

Needless to say, I still don't have a definitive diagnosis. I don't know when I will. I don't know when I will start treatment. I don't know when I will feel better. I don't know a whole lot of things. I do know that I have an appointment with my neuro next Monday and maybe I will know more then.

Good Grief!

Waiting on results

Sorry for the slow posting around here! I had that darn spinal tap last week and it kinda threw everything off.

So I did survive the spinal tap, but I would recommend it to absolutely NO ONE. Not even my worst enemy. I was told by the doctor performing the procedure that other than the lidocane shot, it wouldn't hurt. He lied. It hurt. A LOT!

And while yes, I do suppose that there are MUCH worse things that one could go through, this still stunk. And it was still MY back that the needle was in, thank you very much!

No test results as of yet. They tell me that they should be available by Monday or Tuesday. Then (hopefully) I can get into that clinical trial and start the process of treatment. I am quite frankly over the process of diagnosis.

B12. It's not just for bingo!

I got my blood tests back. Dispite earlier suggestions from the tests run at OHSU, I am not B12 deficient. Which I would prefer to be. The MMA test puts me in the normal range for B12. Apparently the serum test that was run earlier can be way off up and down.

I am frustrated. I am tired. I want to feel better.

The bottom line is that I still don't have a treatment plan in place. I am still so exhausted that it can reduce me to tears. I am sometimes numb, sometimes dizzy, sometimes in pain that is agonizing and other times just annoying. I am often forgetful, I loose my balance, I trip and stumble. I can't predict when and where and how my body will fail me today. I just count on it failing.

I am tired of my body not working the way I want it to. I am tired of being sick. I am tired of not having answers.

This is Spinal Tap

If you have seen the movie Spinal Tap, it is hilarious.

If you have had a spinal tap, not so much. I get to have the procedure. Lucky me.

Apparently the medical community likes to call them lumbar punctures these days. Doesn't it sound more user friendly? It's still a needle in your back. It still hurts. I still don't want to have it done.

My mother tried to make me feel better by reminding me that I am a grown up and sick little kids have to have them done all the time, and they get through it. Didn't help so much. I know I will get through it. I just don't want to do it!

So why am I having my lumbar region punctured? Well, it goes like this. Apparently I am Vitamin B12 deficient. I had blood drawn last Friday to run a methylmalonic acid test to determine if I am dietarily deficient or if my body is just not absorbing the B12 I am ingesting. Chances are I am not absorbing it because it doesn't take much to get enough B12 in your diet. For example, a McDonald's Cheeseburger has 40% of your RDA. B12 is only found in animal products (meat, eggs, cheese and milk) of which I get plenty every day.

B12 deficiency can mimic MS symptoms, and in extreme long-term deficiency, can cause demylination and lesions in the brain. The acceptable levels of B12 in blood serum are 160-680. Mine came in at 110. Treatment for B12 deficiency is easy. They usually start out with injections to bring the levels up quickly, and then switch to oral or sublingual for long term treatment.

Which brings us to stabbing my back. My neuro wants to do the LP because a handful of my symptoms are typical of MS and atypical of B12. There is a protein in the spinal fluid that is SOMETIMES (about 60%) present in people with MS. If the test is positive, it would be a definitive diagnosis of MS. If it is negative, we treat the B12 problem and take a wait and see approach on the MS treatment.

I would be THRILLED if after all this drama and heartache that this was merely a vitamin deficiency. However, since the LP is not a definitive test and we get a negative result, I feel like we are still on the fence about what is going on in my nervous system.

For right now, I just want to get this LP behind me. I am having it next Tuesday AM and one of my "moms" is going with me to hold my hand and pray over me while I get stabbed.

I have a great family! In the physical, emotional, and spiritual sense.

Bad Blood

Well, bad blood draw that is. I have had blood drawn twice this week. Both with varying results.


Admittedly, I am a lousy stick and a fairly difficult draw. My veins are small and deep. They like to roll over and to add to the fun, they like to collapse if you draw too fast. I am best drawn with a pediatric butterfly needle on the back of either hand, although the right usually is easier to locate a vein in than the left. I always share this info with the phlebotomist who is lucky enough to have to find my veins. I am not freaked out by the sight of blood, and though I used to go queasy at the sight of the needle, I do okay now as long as I don't watch it go in. Once it goes under the skin, I am okay. Its the whole insertion thing that makes me woozy. Weird, I know.


So I filled the guy in, and after inspecting my teeny tiny veins he elected to go with a butterfly in my right arm. I have had the hematology office land there with great success lately, so I figured, why not?


This is why not:




After about a minute of him digging in my arm declaring, "I think I almost have it!", I told him he didn't have it, wasn't getting it and to pick a new spot. Okay, I was more polite than that. I really said (through clenched teeth), "I think we should try the back of my hand now."



This was the result of that attempt:

This time he did hit a vein and I watched as blood started pulling up the tubing into the vial. We were doing two vials. As he approached the end of vial one, he started pulling harder on the plunger. I reminded him that my veins collapse if you pull too fast. And then it did. (Yes, I can feel them collapse. It hurts.)

He apologized and said that he would need to stick me again to fill the last vial. I smiled and said that was fine, but you only get three sticks in one day before I get really irritated. He decided that then would be a good time to get help.

Admire:

No bruising, no swelling, no pain. Amazing. Also amazing, this hand has had 3 sticks this week. Once by tech #2 on Monday and twice by the phlebotomist at the hematology office on Thursday. The hematology office had to go in twice because they didn't get a great stick the first try and were concerned about collapsing the vein. Still didn't bruise me though. That's also the first time they had a bad stick on me in about 6 visits. Impressive!

I love a good phlebotomist!

Dontcha love a good diagnosis?

I just got back from the hematology office for yet ANOTHER blood draw. At the rate I am giving blood, I will be anemic! The lab tech was much better today than the student who was stabbing at me on Monday. My right arm and hand still look like I got beat with a stick.

The good news is that my white count is down quite a bit from last month. I came in today at 13.6. The high end of normal is 12, so I am close. Last time we were at 16.9, which was my all time high. The hematologist has decided to "officially" diagnose me with Chronic Idiopathic Leukocytosis. In other words, my white count is chronically elevated for no apparent reason and its nothing to treat or worry about. Which is good, because I am already starting to feel like a walking pharmacy.

I started taking a drug for alertness (Amantadine) on Tuesday. It seems to be helping a little, but not as much as the other drug that I was hoping for (Provigil). The Neuro wanted to give the other drug to me as well, but the insurance companies aren't very fond of paying for it. So we need to try this one first and then we can request the other one if this one doesn't work.

On Monday I am going to add a drug (Gabapetin) that is supposed to help with the neuropathic pain in my hands and feet. I didn't start both at the same time because we needed to make sure that if I had a reaction to either one of them, we knew which one it was. I am hoping that it will help provide some relief for the constant burning and pain.

Anyway, I am happy that my white count is down and approaching normal. Also happy that I don't have to go back to the hematology office until the end of September! I am going to get to have blood draws every month if I get into that clinical trial at OHSU, so less is more as far as I am concered! Hopefully the student vampires will improve their blood sucking skills before I get to see them again.

Undiagnosed?

So today I had the long awaited Neuro appointment. *Yeaaaaaaaaaa!!!!!!*

I really liked my Neurologist, Dr. Mass. She is very knowledgeable and very informative. She is not a warm and fuzzy doctor, but is not sterile like some doctors I have seen before. You know, the "The facts ma'am, just the facts" kind of doctors. She also has a good sense of humor and seemed to get mine, which to me is kind of crucial. My hematologist does NOT get my humor and frequently misreads my sarcasm as a new and strange symptom.

Dr. Mass and I had a long talk about history, symptoms and problems that I am having. Then she informed me that while I had classic MS symptoms, according to diagnostic standards, I can't be diagnosed with MS officially until I have had another "clinical event", ie: a new round of symptoms, more lesions in my brain, or an end to and then exacerbation of my existing symptoms. In the meantime, I have Clinically Isolated Syndrome or CIS. In other words, all signs point to MS and most people with CIS eventually get diagnosed with MS, I just don't OFFICIALLY have it yet. It's like having a green card. You can be in the US, you just aren't a citizen.

With CIS though, it is prudent to begin treatment on one of the MS drugs. Initially, I had been leaning toward Avonex because it is only injected once a week. Then I started reading about Tysabri, which is a once a month infusion and thought that would be the way to go. When I brought it up to Dr. Mass she responded with, "Absolutely NOT!" before I had even gotten to the reasons why I thought it was a good choice. Her biggest concern? It can kill you. (Minor detail.) She said that we would only consider it if all other treatments failed.

So after much discussion of the pros and cons of the ABCR drugs, we were back at Avonex. Yes the needle is bigger than the rest, but it only comes once a week and is injected only in the thigh. The other ones rotate through the arms, legs, butt and STOMACH. Ugh! That did me in. No stomach injections for me, thank you very much! However, there is good news here.

OHSU is just getting ready to start a clinical trial on combining Avonex with Rilutek, an FDA approved medication used in ALS (Lou Gehrig's Disease) that is thought to slow down nerve cell death and delay progression of ALS and hopefully MS. The study will last 2 years and during that time, all of my treatment drugs, MRI's, neuro appointments and blood work will be covered by the study. That is a gift worth about 50-60k!

Additionally, Dr. Mass prescribed a couple of symptomatic treatment drugs for me. One is designed to help with alertness and cognitive function. The other is supposed to help my neuropathic pain in my arms and legs. Interestingly, the neurologist said the the nerve damage in my legs and feet was worse than the damage to my arms and hands. I find this odd because my arms and hands hurt all the time. Dr. Mass feels that is because the nerves are already past that point in my legs and feet.

Finally, I did have some additional blood work run to rule out vitamin B12 and copper deficiencies, which she says will be surprising if they come back positive, but we need to make sure. Also, we are sending blood to the Mayo Clinic (Woooo, fancy!) to rule out some bizarre neuro disorder called Devic's Disease. It mimics MS, but isn't MS. There is (like MS) no known cure but there are some treatments that can reduce symptoms. I am all for having a vitamin or mineral deficiency! Easier to treat and not a chronic illness. I will have the results back in one-two weeks. If there are no findings from the lab work, then we will proceed with the clinical trial.

Thank you to all of you who have had me in your thoughts and prayers throughout this process. Praise God for the wisdom of the neurologist and the kind and informed treatment that I have received. Continue to pray for guidance for all the clinicians that I come in contact with and that if I do start a treatment plan, it is effective in treating my diagnosis. Whatever that may be.

My God is more powerful than.......

I keep saying that I know God is in control of everything. That he has a plan and a purpose, even for my MS. That he is more powerful than any illness or situation I may find myself in. I keep saying that because I want to believe it whole heartedly, and if I say it often enough maybe I will. I want to know it without a doubt. Down to the very fiber of my being.

But honestly, I do have doubts sometimes. That little nagging voice at the back of my mind that says, "You are only going to get worse." "You can't afford the treatments." "You should give up any idea of going back to school." "You can't do it." "You are a failure."

Today I read a great post by John Acuff at Stuff Christians Like. Go check it out. I'll wait here.

Good stuff, huh?

And then I had to ask myself, Is MS more powerful than God? Is my neurologist more powerful than God? Are my medical bills more powerful than God? Is my financial situation more powerful than God? Is my pain more powerful than God. Am I more powerful than God?

No. Nothing is more powerful than God. NOTHING.

My God is more powerful than me, my financial situation, my medical expenses, my chronic pain, my neurologist and far more powerful than my multiple sclerosis.

O great and powerful God, whose name is the LORD Almighty, great are your purposes and mighty are your deeds. Jeremiah 32: 18b-19a

The Case of The Wrong Neurologist

Over the weekend I received a new patient packet from OHSU for my neuro appointment on the 6th. In looking it over I discovered that I had been scheduled with a doctor other than the one that I was referred to.

I called OHSU on Monday and asked why that was, and if this other doctor I was scheduled with was an MS Specialist as well. I was told that she was not, but that I had to see her (the other doctor) first in order to get to the doctor that I wanted. I was a little aggravated, but figured that was just the way that it had to be. Red tape, bureaucracy and all.

Today I got a phone call from OHSU saying that they had scheduled me with the wrong doctor. I called back and not only got scheduled with the doctor that I wanted to see (Dr. Mass), I got in 2 weeks earlier!!! I get to go in NEXT MONDAY!!!!

Happy dance, happy dance!!!! =)

*Thanks to Raymond Burr for making a cameo in my post. I love Perry Mason!

If I only had a brian!

But wait, I do! And now I have the pictures to prove it. I can prove it to my nephew Kaden too, who asked "did the doctor see anything?" after he heard that I had an MRI done.

Behold, it's a BRAIN!

This is apparently the top of my head and perhaps my sinus cavities? If that's what those dark spots are, no wonder you feel like your head is full of snot when you have a cold. Cause it is!

Look ma, no lost marbles in here!

Now I don't know what exactly which pieces of the brain this image shows because, well I am not a neurologist. However, I do know that is my brain, shot from the left side, and the brain stem. I find these pictures a little freakishly amazing!

I also have pictures of my spine and thoracic cavity (chest) if you are dying to see more of me. There are over 2800 images on this disk. Sadly, I could spend hours looking at them because I find them that oddly fascinating! And if you are as oddly fascinated as me, just let me know, because I would be happy to marvel over the wonder of the human body with you.

It's always sunny in Philadelphia

I got the blood work back on my chromosome testing......

NO PHILADELPHIA CHROMOSOME!!!!

That means that I can not have CML. Ever.

The hematologist wants to see me again in two weeks for another draw to check my white count. Based on how I am feeling and the worsening of some of my symptoms, I am pretty sure it will still be up. This does not worry me though, because I really feel like I am in the middle of an active relapse and as soon as I can start the meds, things will improve.

On that note, I FINALLY got an appointment with the neurologist. I see her on July 6th at 9am. I am really hoping that she will have some good news regarding treatments, results, expectations and some creative solutions on how I am going to pay for all the meds.

Should I stay, or should I go?

I had a follow up visit with my PCP today (Whom i LOVE by the way*) so we could talk about treatment, follow up on progress with the neurologist, and see how my current meds (having nothing to do with the MS) are doing.

She doesn't feel that we should start on any of the MS treatments until after I have had the neuro consult and they decide which form of MS I have. (I can write more on that later) She also suggested that if I got tired of waiting on the MS Specialist Neuro, she could probably get me into a regular neuro faster. The idea being that I would still have the referral to the specialist, but I could see someone sooner and possibly get started on the meds.

I need to pray about that decision. I really feel like I want to see someone who eats, sleeps and breathes MS neurology; but I really don't want to wait all summer to do it. Especially if starting the drugs could get me into remission. I can always change to the specialist later, if it seems that it would still be beneficial.

Should I stay, or should I go?

*If you are in the Portland area and are looking for a doctor, I can't recommend their office enough! South Tabor Family Physicians is in the Mall 205 area and I think they are fabulous. Especially my doctor, Jeana Crover.*

One step closer.....kind of.

I FINALLY got the call I was waiting for from OHSU Neurology yesterday. I grabbed my planner and insurance card, and stepped out into the hallway anticipating setting an appointment. Apparently, that's not how these things work.

The scheduler wanted to know where my chart notes were.

ME: Umm, with my doctor? I can bring a copy to my appointment.

OHSU: Oh, no. The Neuro needs to review them first to determine if we will accept you as a patient.

ME: Okaaaay. So we aren't actually SCHEDULING an appointment right now?

OHSU: (chuckling) Oh no. First the doctor has to accept you. Then we call your insurance to verify that they cover our services. Then we will call you to see when we can get you in. We will probably call back in a couple of weeks and then you should have an appointment, ohhhh (clicking through scheduling screens) by the end of August.

ME: THE END OF AUGUST!?!?!

OHSU: Yes, this is a very busy practice.

ME: (deep breath) Just so you know, I don't feel good. I REALLY need to see the neuro as soon as possible. I would like to start the beta infuron treatments but I need to see the neuro first.

OHSU: I guess I could flag your file as urgent.

ME: That would be great. When can I expect to hear back from you?

OHSU: Oh, probably in a week or two.

ME: You know, I will probably call back before then.

OHSU: Yeah, we already know you by name here in the scheduling department. You are persistent.

ME: Hopefully not annoying?

OHSU: No. But only because you are so nice about being persistent.

ME: Okay then. I am sure we will talk again soon.

OHSU: (laughing) Oh, I don't doubt it!

Yeah, that's me. Pleasantly persistent. Not patient whatsoever. Persistent.

Symptoms

MS symptoms are a fun bag of tricks. They vary from person to person and from day to day. The most common complain in MS patients is fatigue. Not just being tired. It feels like your whole body is encased in wet cement and can't get out. Everything is in super slo-mo. And your brain is working overtime to try to keep up.

Other fun symptoms I have experienced so far:

• L'Hermites Sign
• Neuropathy (tingling in my hands and arms. Usually worse in my left)
• Headaches
• Tremor (usually brought on by overuse/overexertion of a muscle group)
• Short Term Memory Loss
• Lack of coordination for fine motor skills
• MS Girdle
• Stabbing Pains (For me this has been localized in my big toe while driving and sleeping)
• Proprioceptive Dysfunction (I wake up feeling like I am holding something ie: a pen, the remote, my phone and am not. I also feel like my hands are somewhere they aren't.)

I don't have all of the symptoms all of the time. The neuropathy in my hands, the L'Hermites and and fatigue seem to be the most consistent at this point. Some days are worse than others. There are a host of other symptoms that I could be experiencing, and I am thankful that I am not at this point. This is a weird disease.

Patience

I am not a patient person.

For those of you who know me well, you can stop laughing now.

I like results. Forward motion. Action. I don't like waiting, ambiguity and unknowns. Yet I am finding that the process of dealing with insurance, physicians and treatment is full of waiting.

I still don't have a neuro appointment. OHSU doesn't have my referral yet, so I spent time on the phone yesterday with my PCP's office tracking it down. I also gave them the fax number to send it to so we don't have to wait for the post office to take it across town. I also scheduled an appointment with my PCP on Friday to talk about starting one of the ABCR drugs that are used to treat MS symptoms. I don't know if she will be willing to start me on those drugs without a neuro consult first, but I am hopeful that she will. I would just like to have some of my symptoms start to subside and perhaps start heading towards a remission.

In the meantime, we wait

Walking into the unknown

I have been on a retreat with my Northwest Passage group for the last two days. Yesterday we did a ropes course that left me frustrated and doubting my physical abilities. I couldn't complete tasks that involved balance and visual impairments.

At one point I ended up in tears. Mad that my body wasn't cooperating with my brain. Frustrated that I seemed inadequate. Disappointed that I couldn't complete the task at hand. And most of all, scared that all of it was out of my control and terrified that this was only the beginning of what is to come.

Today we went rock climbing. Based on yesterdays experience, I was prepared for failure. But on the way there, I decided that I had to try. If I live my life in fear of what I can not do, the MS has already beaten me. If I try and things don't go according to plan, at least I know where my limitations lie. And just because things don't go well today, doesn't mean that they won't go better tomorrow.

So we hiked up to the top of Horse Thief Butte, just east of Dallesport, WA and prepared to repel down a rock cliff about 150 feet up. After we harnessed in, we called for belay on and walked backwards to the edge, putting all of our weight against the rope that was tied into the rock. Then, one step at a time, we began to walk backwards off the cliff face until we were fully supported by the harness and the rope. Dangling out over the open space and looking to the west at the snow covered face of Mt. Hood.

On the way down my hands went completely numb and I grew more exhausted with every step. But I made it! I made it all the way to the bottom, without having to stop and turn my decent over to my partner on belay. When I got there I collapsed into a quivering pile of jello. My right hand tremoring and cramping into a claw for about 30 minutes.

Yes, the tremor and the claw hand are embarrassing. The fact that I walked around tripping over grass and dust piles for about an hour after my decent is too. But I didn't care. I did it! I tried something I didn't think I could do. I pushed myself and worked up to my limits. Yes there was a trade off of being exhausted. I decided that I wasn't up to climbing anything in the afternoon. But I repelled. Right off the face of a cliff and into the unknown. And I am so glad that I did!

Stop the Presses!

So my crazy insurance company did an about face and decided to approve the chromosome test that they were not wanting to do yesterday. The good news there is that I don't have to do the bone marrow aspiration next week! Woohoo!!!

Also, while my white count is still up; the doctor told me when I went back for my second draw of the day, that he did NOT see any myleocystic leukocytes today! Plus, he was talking to a colleague about me today and was reminded of a rare blood disorder that doesn't do anything negative to you, it just gives you a high white count for no apparent reason (chronic non-specific leukocytosis is what I think he called it). In other words; it doesn't go away, they don't know what causes it and it involves the white cells. The good news; they monitor it and it doesn't seem to do anything bad to you.

So I have 1-2 weeks to wait for the chromosome test to come back. Pray that they don't see the Philadelphia Chromosome! Philadelphia is a great place to visit, but I don't need any souvenirs.

And the magic number is... not 16.9.

My white count is still up. In fact, it is up even higher than 2 weeks ago. I am waiting on the meylocystic leukocyte count, but my hematologist is guessing that it will be up too. If only the stock market would head up like my white count!

He has ordered a bone marrow aspiration next Friday morning. It should tell us definitively if I have CGL or CML. Both are pretty much the same thing, chronic meyleocystic leukemia. The good news is still that if that is the diagnosis, we will have caught it early and the treatment (Glevik) is very effective and has fewer side effects than many other forms of chemo.

So, we still don't know if I have cancer. And we aren't going to freak out about it. That means you. And me too!

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-7

Waiting game

No news yet on when my neurology appointment will be. OHSU will not schedule an appointment without a referral in hand, and since my doctor made the referral yesterday, they don't have it just yet. Scheduling said they would call me when they had it, but I am not the most patient person when it comes to scheduling. I will let them be til Friday and then I am calling again.

I have my follow up appointment with the hematologist on Thursday. Still waiting for my insurance company to approve the additional testing that he wants to run. I am just hoping that the CBC will show that my white count is in a normal range and the hematologist and I can part ways.

The neck bone's connected to the...

I went and picked up my MRI report from my PCP today. I needed it to send into Aflac to receive payment under my Sickness Plan. I was also curious to see what exactly they had found. I am hoping when I see the neurologist that I will get to see my films too. I figure if you are going to pay 10k for pictures of your brain, you should at least get to see them. Heck, I might frame them at that price!

According to the findings I have an 8mm lesion in the left corpus callosum. That part of the brain is the largest area of white matter in the brain. The white matter is effected by demyelination that occurs in MS. The corpus callosum divides the hemispheres of the brain and coordinates communication between the two sides.

I also have an 11mm lesion posterior to the left lateral ventricle in the left parieto-occipital region of my brain. The parietal lobe plays roles in integrating sensory information from multiple locations in the body (guess that explains all my tingling sensations), the manipulation of objects and the knowledge of numbers and their relations. That last part made me laugh. Math has never been my "thing". I am blaming my poor little demyelinated 'mathy' nerve endings! I have to find the humor in this situation where I can.

Finally, I have a 6mm lesion in the posterior cervical cord at the c2-3 disc space. The c2-3 is higher in the neck, below the brain stem at the base of the skull. There is also a small bulge in my c5-6 space, but it is causing no significant canal stenosis.

So there you have it. A bunch of medical mumbo jumbo to let me know that my body has decided to chew on parts of my brain for a light snack. I feel oddly better knowing which parts of my brain are being munched on!

Who's on your team, who's on your team?

So when a crisis comes up in your life, do you have people to turn to? Not people to solve your problems. Not people to pick up the pieces. People who will walk beside you and share the burden. Love on you and listen to you.

I am so blessed to be surrounded by wonderful friends and family who are doing just that. I am still wrapping my brain around this diagnosis and what it all means, but I have been covered in love and prayers from around the world (literally) and I feel so blessed to have dozens of people who are walking through this with me.

They may not understand this any better than I do, but they are right there with me, encouraging me, sympathizing, listening and caring. And I couldn't ask for anything more.

So who is on your team? And more importantly, whose teams are you on?

If you have any encouragement from being united with Christ, if any comfort from his love, if any fellowship with the Spirit, if any tenderness and compassion, then make my joy complete by being like-minded, having the same love, being one in spirit and purpose. Philippians 2:1-2

Either something is wrong or I am loosing my mind

In mid March I was running late for work (as usual) and was toweling off after a quick shower when I noticed that a band of skin under my breast bone felt.....weird. I looked in the mirror. No rash. I poked at it. No pain. It just felt like the skin had gone to sleep and was tingling. I chalked it up to a pinched nerve or sleeping funny and finished getting ready to head to the office.



The next day after my shower, I felt the same tingling. Three days later, still tingling. In fact now it was tingling all the time. All day long. I was busy and didn't have time to deal with it. I was leaving soon for a week in Mexico with one of my best girlfriends and figured it must be stress related from having to cram all my work in ahead of time.



April 1st arrived and the tingling had progressed to pain. It felt like someone had wrapped an ace bandage around the top of my ribs as tight as possible. It hurt to breathe. I was rubbing my stomach all day long. One of my co-workers begged me to call my Primary Care Physician. I was leaving for Mexico in 14 days. The last thing I needed was to be sick. I called my PCP's office and they had me come in that afternoon. My doctor was out, so I saw another doctor in the practice. He did a physical exam and drew blood. He assured me that it was probably a virus or a nerve issue and that we shouldn't worry too much about it. "I am sure we are not looking at anything like cancer, Parkinson's, MS or something serious." he told me.



Two days later I got a call that all my blood work was normal other than a mildly elevated white count. Call if I got worse or failed to improve, but otherwise we would assume it was a virus that would run its course. I figured the elevated white count and a virus would explain why I was so tired too. I figured that once I got out of the country and enjoyed some sun and relaxation, I would feel much better.



On April 15th we left for Puerta Vallarta. My hands and feet kept falling asleep on the plane. I figured I was dehydrated and really pushed a lot of water into my system the first 24 hours we were there. My stomach had finally stopped being numb all the time and I was on my first vacation in 5 years. It had to be stress and too much work. I just needed to relax.



On the 17th we went snorkeling. As I bent my neck forward to pull on my flippers, I felt an electrical current pulse through my body. I looked up in surprise and turned to my girlfriend to see if she had felt it too. Apparently not, since she was still getting into her wetsuit. I turned my attention back to the flippers and felt it again. Throughout the rest of the week I could produce the same result by pulling my chin down to my chest. The electrical pulse only lasted a second, but it was strange and alarming.



My hands were numb off and on for the rest of the trip as well. Thankfully it was a vacation and we had no scheduled agenda other than eat, sleep, swim, drink; repeat as necessary. I wasn't tired anymore, but I was also sleeping 8-10 hours a night and napping for 1-2 hours every afternoon. It was like I had sleeping sickness. I decided I was just really relaxed.

When I got home and wrapped my brain around working for a living again, I checked my voicemail and found a message from the doctors office. They wanted me to repeat the CBC panel. I went in, had the draw and once again my white count was elevated. No change in the past 3 weeks. They decided to refer me to a hematologist for further testing.

The hematologist was a fanatic about blood. I learned more about blood from him in the 3 hours we spent together than I ever did in biology class. He felt that my blood looked pretty normal, but he was concerned that my white count was STILL elevated 6 weeks after my first draw. He felt that we should run a special test to screen for myelomonocystic leukemia. He also ordered an MRI to, "rule out brain/spinal injury, tumors and MS". So I scheduled the appointment, bummed a Xanax off a girlfriend (hi, claustrophobic!) and spent 2.5 hours in a banging, clanging tube while being filled with magnetic waves and glow in the dark dye.

Two days later I began pestering the doctor for results. When I got his PA on the phone she said she would have to have the doctor call me back because he wanted to give me the results himself.

This can not be a good sign.

When the doctor called me back he said that there was no indication of tumors (whohoo!), no damage to the spinal cord other than a mildly bulging disc in my cervical area; which given the multiple car accidents I have been in, was not surprising and no big deal. But there were multiple lesions in both hemispheres of my brain and that I would need to get a referral to a neurologist.

Lesions? What lesions?

"Multiple Sclerosis. You have MS. The radiology report is very clear in its definitive diagnosis."

Not. what. I. wanted. to. hear.

Remember how we were ruling MS out? It wasn't on my list. Besides, I like my brain. Without lesions, thank you very much. And a chronic, incurable auto-immune disorder? Ummm, NO. No. NOOOOO! I want something we can fix. Something predictable. Something that will GO AWAY!

I just wanted a diagnosis. Not a life altering condition.