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.