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