What Do We Do Next?

It's been a week since my doctor called me with "I just want to do one more blood test, I'll call you and we'll set it up." I haven't heard from him. Lab tests are usually quite simple, and can be ordered like a prescription -- just write it on a piece of paper, then I go do all the legwork, like finding a lab, etc.

I think what's happening is that he can't find the test. I don't think it exists. I can't decide, as I watch from the outside and guess, whether he's lost the name of the thing he's testing for in translation (he's from South America and has a strong accent), so maybe he's just saying the name of the test wrong for English or something -- or, if the thing he wants to test for just isn't something people test for anymore (he's also really old), maybe that test was eliminated in favor of a more accurate test or something.

Anyway, that my pure speculation, as I wait. So, I called the office today and requested an appointment. I'm actually hoping he forgets about this blood test and moves on. I say this because I don't think the test exists. I've looked it up on the internet, with his spelling and other spelling variations, and can't find it!! Seriously, how many things exist and are no where on the internet. I've found some things that are similar in word, but are pronounced completely differently. Those things merely test for Stiff Man Syndrome, which he already tested for and got a negative result.

So, since we seem stalled here, my goal is to go see him face to face (where he can't cut off my questions abruptly on the phone like he did last week -- not his fault, he just has no social skills), and ask him if we should get that last test, if it's even possible, or it if really is redundant, or what. And then I can ask what we're doing next.

I don't think there are any more things to test, so I really want to ask him what we do next. We've covered spinal, autoimmune, and brain. That leaves the untestable, and there are a few of those that we'll look into next. The nurse says I may get an appointment with him next week. I'll let you know how it goes, of course! :-)

One More Thought

So, I was thinking last night and this morning. Seeing as how my doctor has now gone through every testable thing that even somewhat describes my symptoms, I was feeling at a loss, and not knowing where we would go next. It will be weeks before I can see my doctor again and ask him what comes next. I was wondering, what if he has no ideas? Should I get ideas for him?

Then I remembered that many months ago my doctor and I talked about how it could be Hereditary Spastic Paraplegia. This is a disease that you can't test for, you merely eliminate everything else. So, we just had to wait and run the tests. I had forgotten about it. However, now that we've eliminated everything else? hmmm. :-)

I looked up the condition again today, to remind myself about it, and was shocked at how exact the symptoms are to mine! Of all of these autoimmune and spinal cord diseases we've been testing for, none of them described me exactly, and most didn't even describe me much at all. It was quite a relief to read something again that really did describe me.

So, I called up my doctor's nurse, in attempt to get a message through to my doctor. I asked her to please remind him that we once talked about HSP, and to ask him to see if he thinks it describes me now that we've run all these tests.

Who knows if the message will actually get through, or what my real diagnosis really is. Time for more waiting. Someday, I'll get another appointment, and then I'll get to see what he thinks of all of this. :-)

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Thanks to all of my great friends and family for hanging in there with me through all of this! I couldn't do it without you and your support and your prayers!! Thank you so much. Lots of love back at ya!! :-)

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Oh --- and bonus points to anyone who knows where this picture (above) was taken! :-) I didn't take it, I found it on the internet.

My Doctor Called

Ok, my doctor called while we were at the pool today, so it was kind of an unexpected time for his phone call. He said the tests for the GAD antibodies and for the Voltage-Gate Potassium Channels (VGKC) antibodies both came back negative. So, good. More diseases we've eliminated. The problem is that he ordered a third test, for Amphysine antibodies. That test got lost in the runaround because no one knew where to send it to. Apparently even the Mayo Clinic doesn't do that test. So now my doctor and his staff are trying to find someone in the country who can do that test, then I'll go give them more blood again. Another 4 hours checking into the hospital just for a blood draw, and another at least two weeks waiting for test results.

The worst part is that I really don't think this one will be positive either. From what I've read on the internet, it looks like that test is for some disease in which you get stronger the more you try to move a muscle. I'm the opposite, getting weaker the longer I use a muscle. So, I don't think we're going down a very good path here. But what other paths are there? Are there any other paths? Maybe I should just get used to no diagnosis.

I've been thinking about FDR. He thought he had polio, but scientists now are looking at his symptoms and think he probably had Guillan-Barre' syndrome instead. There are a few differences, but his life was the same either way, with polio or with GB. There was no test when he was alive to identify what he had. When I first heard about this, I was shocked, thinking: "How could he go through his whole life thinking he had some disease he didn't have?" But now I'm thinking: "Maybe it doesn't matter what it's called. Having a more accurate diagnosis wouldn't have changed his life at all. Neither was treatable during his lifetime."

For me, maybe it won't matter what my diagnosis is either. Nothing that it could possibly be has any treatment or cure. So knowing probably won't change anything. Except maybe it would help when people ask "What happened to you?" Right now I keep getting tempted to answer: "Nothing. Nothing happened to me. I'm just living my life day by day, and I don't know why I can't walk." Of course, I'm sorry to all of my sweet friends and loving family when I don't have an answer for you. I've tried. I've taken many tests, and have been patient waiting for weeks between each of them. And I'm still taking them. But maybe there won't be an answer that we can find. Maybe whatever's wrong with me won't be discovered and diagnosable for another 100 years.

Doctor Update

Just writing to let you know that my doctor's office just called me. We sent my blood to the Mayo Clinic 2 weeks ago today to test for antibodies for rare neurological autoimmune diseases. We expected to get the results back by last week at the latest. However, they were calling to let me know that my doctor has not yet received my test results. He will call me when he receives them.

Sunday Night Family Bike Ride

A video I took while we were on our bike/scooter ride.

Stopping to let cars pass. The boys are on their bikes, and I'm on my scooter. I love that I can join them on their bike rides now! It's hard to tell, but Sam just got a new bike Saturday. Not only had he outgrown his old bike, but it was falling apart. The brakes weren't great, and always had a time-delay on them; and the chain came off at least once a day. Now, one day into using his new, bigger and fully functional, bike, he's riding like a pro again!

Oh, and Brian and the boys made a great house of cards yesterday, too. They used every card in the deck by the time they were done! What a great Father's Day! :-)


Sam and Brian.

Alexander.

Lots of natural sunflowers and great pillowy clouds decorated our evening!

Georgeous man!!

Videos -- Sam Being Sam

This is such a fun video. He was doing this naturally, so I started the camera rolling!

Sam playing piano. He plays it a lot faster in the second half of the video, lots of fun!

Time for School Pictures & Alex at Scout Camp

Here they are, the official school pictures for 2009-2010. I know you were waiting for them!

We do this every year, partially to have annual school pictures, like they would've had in public school. That's fun, because you can see them grow year by year. Also the pictures are for their Homeschool IDs, from homeschoolid.com.

Alexander

Sam

The boys together.

and, of course, the crazy picture!

Here's a great video Brian took of Sam going down a water slide at Cub Scout Day Camp two weeks ago.

Scouter Alexander!!

He earned belt loops in: Ultimate Frisbee

BB Gun Shooting

and Archery!

Scooter Thank You Letter

I just wrote my thank you letter to the people from whom I won the scooter in Dallas. I'm not trying to show off that I wrote a thank you letter or anything, I did it because I really wanted to. But I thought you guys might like to read it too, because it describes all of the new things I can do with my scooter, and I wanted to share with you how wonderful that is! :-)

Oh, also, it was a good chance to remind my kids of the Bible story about the 10 lepers, and how the one said thank you. Trying to be a good example for my kids 'n all. :-) I hope it worked. :-)


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A few weeks ago, my family and I attended Turning Point’s 2009 Dallas Extravaganza. At that event, I won the Pride Celebrity X electric scooter in the raffle! I am so incredibly happy that I went to this event, and that I won your scooter. I love it, and it is really raising my quality of life! I wanted to take the opportunity to fully express my gratitude that this item was available in the raffle.

I didn’t even know I needed a scooter, but now, after only two weeks, I don’t think I could live without it! I was the type who pushed my wheelchair hard, even over very rough terrain and extreme hills, and my shoulder was suffering for it. Now, I am able to use the scooter to get around outside without over-exerting myself!

I’m so happy it’s the outdoor type scooter. I even love the blue color! They are exactly what I would have chosen. Having a scooter to use outdoors is exactly what I needed. The two things I really miss since I became a wheelchair user a little over a year ago are gardening and long walks and bike rides. Your scooter has given them back to me!! Now I can move all around my hilly, bumpy lawn quickly and with ease, and I can access all of it to water my lawn! Last year all the grass died because I couldn’t access most of it. I love lawn watering, it was a fun hobby of mine, and I’m so thrilled to be able to do it again! I can also access all of my potted plants all over the property easily. Looks like I may have to really start gardening again. :-)

The other joy that has returned to me is long walks and bike rides. My husband and kids ride bikes around the neighborhood and on trails quite a bit. I was considering buying a handcycle, because I desperately want to join them, and I can’t push my manual wheelchair fast enough to keep up with them. However, I couldn’t afford a handcycle. Even if I could, I was concerned I’d hurt my shoulder more. Now I am going with them on all of their biking tours! I love it, I love getting out, and I love feeling like I’m part of the family again!

When my kids used to go bike riding without my husband, I had to have to follow them in my car in order to watch over them. That was just wrong! My kids and I are so happy that I’m “with them” now when they ride bikes! I’ve been heartbroken this past year thinking of all the things I will miss doing with my children. I don’t worry about those things anymore! I now chase my 9-year-old and 7-year-old sons around my yard and around my neighborhood! I feel like a mom again! We have been having so much fun playing together now that I can move around better. I love it!! I also look forward to taking my kids to grassy and rocky parks and trails around town. I’ve missed all of these things so much! Now I feel so free to be able to go almost anywhere I want to go outside, no matter the terrain, the incline, or the distance. Thank you so much for giving that back to me!!

I’m very impressed with this scooter and its technology. It’s very sturdy, and well made. I like that it’s rugged, and I’m very happy that I won an outdoor scooter, since that is mostly how I will use it. I also use it in my kitchen sometimes, such as when I am tired, and when I have to go back and forth carrying lots of items as I cook and clean. I can carry so much more with my new scooter. That basket is a lifesaver!

I am also impressed with how slow it can go. When I’m making tight turns in my kitchen and living room, it’s comforting to know I can take my time and get the turn right. It really helps me to not run into things too often. Very slow, or as I call it, Full Turtle Mode, is a very great invention. Don’t get me wrong, I use full rabbit mode as well. Many evenings I can be caught joyriding in my scooter at full speed up and down the street in front of my house! Whee!!! Sometimes, a wheelchair-bound person just needs a little speed!

Also, and this may seem like less of a big deal, but I’ve found it to be really wonderful: it’s nice to be able to move around in something other than my wheelchair from time to time! It’s such a freeing feeling to know that I have more than one set of wheels that I can use to get myself from place to place. And it’s all mine! Just knowing that makes me feel more mobile!
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As you know, that first year in a wheelchair is the toughest. I completed my first year only a month ago. Winning this wonderful scooter has also changed my life because, for the first time since that awful year began, something really good happened to me!! I can’t express how much that means to me, or how much I needed it! You have done a wonderful thing by donating this scooter, and I will never forget it!

Thank you so much for this great gift, and for the great sporting opportunities you have now provided for me and my family. We had a great time! I know you probably hand out many donations, but for me, this gift changed my life! I thank God for your kindness in offering this scooter to someone like me. Please know that your compassion and your thoughtfulness are fully appreciated!!

Sincerely,
Brooke

First Scooter Ride

Yes, I know, I really need to name this thing! I think I'm just going to wait, though, until the perfect name comes to me. Until then, we're just playing around and calling it whatever: Matilda, Josie, Denise, Shelly, whatever. It'll take time.

We still haven't completely worked out the seating, but it's already much better. But I couldn't wait anymore, I went on a fun scooter ride around the neighborhood last night!

I'm at the park, and I'm not exhausted! That's a first!!!

We've had some really beautiful sunsets lately.

Sunset at the lake behind the neighborhood. I haven't been able to get back here in 3 years!! I've missed it.

The scooter back home in my living room. You can kind of see the changes we're making to the seating and backing.

Oh, mom, I talked to my tax guy, and he told me what we'll need to do next year to claim it. It's all taken care of.

Sam's Piano Recital

Sam had his first piano recital last Sunday. He's been playing for six months now, and he's having a great time! Here is the video of the song he played for the recital....

Sam and his instructor, Tricia.

All of Tricia's students who performed that day. She teaches both children and adults.

Doctor's Appointment Today

Hey everyone. My doctor's appointment was today. Here's what happened, and what he told me.

He said the MRI results don't show anything. That the variances on it are just normal variety, like if someone's ears are different sizes on each side, it's normal, and doesn't mean anything.

He reperformed my EMG test. I had this done 8 months ago, but he didn't trust the results, which showed that my muscles were fine. He did it again, in MUCH greater detail. We were in his office over 2.5 hours, mostly doing the test. Result: yep, it's true, my muscles are still perfectly fine.

He said it's good to know. We have a lot of eliminating to go through, and that was one more thing we eliminated. He said I'm an interesting case, though he's sure I don't want to be interesting. :-)

The test stressed out my muscles and nerves a lot. It involves electric shocks and needles stuck into muscles, so it was painful. My leg was in full spasm mode by the end, even more than I've ever seen it before! So, now I'm tired and sore, but it's all necessary if we want to finish this.

Next, he wants to test my blood for very rare things. So rare, that I had to wait in the office for 1.5 hours while they called around town to find out which hospital could take the blood for these tests. We finally found one, so next, I went there.

I checked into the hospital, another hour. Then to the lab. They took I think it was 8 vials of blood. The trick is not the taking of blood, but that it then has to be sent to the Mayo Clinic to be processed. So, I guess that would be the on in Phoenix. The tests are that rare!

So, we've eliminated central nervous system, brain, and muscles. These new blood tests are testing for antibodies for autoimmune diseases that attack nerves.

The good news today is that I was able to get the doctor to give me a prescription for an anti-spasm medication, which I needed. I was on a weak over the counter version, so this should be nice.

So, that's it for now. I'm tired. I was at various doctors, hospitals, and pharmacies, and driving, from 9am to 5:20pm straight. It was a long day of diagnosing.

Appointment

For those of you who've been waiting with me -- and I know there are many of you -- I have a doctor's appointment! It's in a little more than a week, so I won't be able to tell you how it went until after that time. But, rest assured, I'll post here as soon as I get home from that appointment, and let you know how it goes.

The appointment will probably consist of him reading my test results, thinking out loud, asking me if everything's still the same, which it is, and then him ordering more tests. So, then, over the next few weeks, I'll take more tests at various locations, and then I'll wait for another appointment with him to review those results, maybe another month or so in the future.

Thanks for everyone's support and love.