Today's Results

Since I had gone to my PCP and he had ordered the CTs of my pelvis and abdomen and then, the next day, referred me to my GYN, it stood to reason that something the PCP saw on the CT needed the attention of the GYN. (are you following this?)

Turns out there was nothing notable on the CT. Nothing abnormal about any organs and no sign of aortic aneurysm or anything else. No masses, nada, zip, zilch.

GYN did a full exam and then ordered a pelvic ultrasound which I will have on Monday.

Tomorrow I go to the consultation visit for the colonoscopy. One test I'm really not looking forward to, but as long as they are poking and prodding every inch of me, what the hey.

It may end up being MS after all...who knows. I do know I need to let go of the worry and of things beyond my control.

I really don't know how those of you out there who have severe disability can cope so well. How do you find the joy in living each day for all it's worth? You are my inspiration, I want you to know. I admire each and every one of you who finds the inner strength to face each day with a smile on your face and not dwell on the bad, but focus on the good.

I thought I was doing so well and had such a good attitude until learning that others see me as a complainer. I am ashamed of myself for being so blessed with the good health I have --compared to so many of you who have lost so much -- and I have been bothered by this all day. I will try to take into consideration that much of my audience consists of MSers who undoubtedly have more issues than I, and I will try not to appear so self-absorbed and whiny.

I do have it good. I am so blessed that my MS is so mild after 11 years. I do thank God every day that I can still walk, that I'm in this trial, that things seem to be going well for me.

I really am not trying to focus on something little and make a mountain out of a mole hill. I have just lost too many people in my life to stuff they brushed off as nothing, which came back to bite them and turned out to be something. I'm not going to let something this weird and abnormal just slide by with no explanation.

I've been writing this blog ever since the start of my trial and I promised myself I wouldn't just be a fair weather blogger, logging only the good things. Rather this is documentation (however interspersed with trivial, unrelated flotsam and jetsam) and all these tests are part of that process.

If this turns out to be in some way related to the clinical trial, I think those who follow along, wanting the unvarnished truth about a first hand participant's experience, deserve to be given the honest truth. Of course I can't hide the fear or whininess, but I'll try.

Hopefully I can get back to posting the hilarity of it all -- just as soon as I get my sense of humor back. I know it's around here somewhere...

My Apologies

To all those suffering from MS who have it so much worse than I do.

As you can see from Kim's comment on my last post, I apparently complain a lot. For that I am truly sorry. I know there are many who suffer far worse than I, and I DO thank my lucky stars that Fingolimod has brought my EDSS from where I was using canes and occasionally a wheelchair and had gone from relapsing every 3 months to not having a relapse in 3 YEARS.

I didn't realize I was such a complainer. I have, right in the tagline of my blog, admitted to being a hypochondriac and I'm a 9.9 on the Worrier Scale, but I didn't realize "Complainer" was my other hat I wear.

I don't do it trying to disrespect anyone else who suffers far worse than I.

And if you mean because I posted about the "buzz" I was feeling in my groin, and you think that it's a slight MS symptom that is unworthy of my worry, mention or complaint, then I have GREAT NEWS for you! IT'S NOT an MS symptom.

I had the CT on Tuesday and yesterday, while trying to shake off the worry and hang out with a friend to watch Avatar, I get a call on my cell phone from my GYN's office. Haven't spoken to them in about a year....

Apparently my PCP called them to refer me due to whatever was seen on the CT.

I won't know what's going on until after 8:45 when I go see him.

When I hung up the phone I immediately puked.

So again, I do apologize to anyone with MS worse than what I have. I am sorry that I appear ungrateful for the mild case of the disease that I have been blessed to endure. And I'm sorry that I whine about whether or not I'll be able to afford this drug which has given me back my life.

As it turns out, I may not have to worry. They may just pull me out of the trial.

Sorry to sound crabby. I don't mean to lash out. I would hate to be in ICU/CCU for MS symptoms of have ports installed for delivery of medicine, or have my child not remember that I could ever walk...

I started this blog to give hope, relieve angst, abate fear, and to let the world know that if I, The Worry Queen, can do it (the trial), anyone can. I hope in some small way I have contributed something others with MS felt was worthy of their time spent reading it. If not, my apologies.

Just because the things I fear are not as bad as what others might live, doesn't mean I'm not going to worry. Maybe I'll just do it inside my own head from now on so you don't read it as complaining....

What's the buzz all about?

No, not some new designer MS drug that I'm going to be talking about... but a BUZZ, literally, in my lower right abdomen.

The only way to explain this odd sensation is to equate it to wacking your funny bone (not so funny, eh?) really hard and that tingling, buzzing sensation that you get. That's what I keep feeling in my right groin and lower right abdomen area. It briefly shoots that buzz down my right leg and up across my side. Sometimes even causing loss of control of that leg briefly. I can't tell you how many times I have nearly fallen because of it.

I had a clinical trial checkup a couple weeks ago and told them about this sensation. The clinical trial nurse said she'd speak with the head neuro and see what we should do about it. Meanwhile I had an EDSS test performed (Expanded Disability Status Scale test) and there was no change, therefore they think it's not MS.

It's been getting worse over the past 2 months. I hadn't really thought about it much because up until I saw the study people I assumed it was maybe a new MS flare and I'd just let them know. After all, I have had Lhermitte's Sign before and that's what this feels like. However I did find it odd that the sensation was down the FRONT of my leg and not the back.

They told me I needed to go see my primary care physician. I saw him Wednesday and ever since I have been a nervous wreck. I can't eat, I can't sleep, and I daydream constantly about what it might feel like to die.

What did he say, you are wondering all alarmed? He doesn't know. There's not enough symptoms to make a diagnosis without a bunch of tests. So....

I have to have a CT of my abdomen and another of my pelvis, I have to have a bunch of blood work done, and I have to have a repeat colonoscopy because the last one I had was 10 years ago.

When I asked what it could possibly be, he said it could be any number of things ranging from ovarian cancer to a colon cancer, to trouble with gall bladder, appendix or a kidney stone. Until we have all the tests back, there's just no telling.

That night I couldn't sleep. I lay there in my bed, staring at the ceiling wondering if the answer is going to be a death sentence.

Another of the symptoms I noticed and mentioned to the doctor was that the nerve trouble seems worse with constipation and since I am pretty regularly constipated (hey! I just made up an oxymoron!) he's got me on Mirilax to try and clear that up.

My CTs were scheduled for 10am today and I called at 8 and rescheduled. I don't know if it's because I am frozen from fear (most likely) or that my rationale made sense, but I told them I wanted to give the constipation a chance to clear up so they could see everything clearly on the CTs.

Now I've bought myself time until Tuesday at 10:30.

The colonoscopy scares me even more. I hate feeling so helpless and vulnerable while being poked and prodded. I'd just as soon go on day in and day out having a normal healthy life, thank you very much. But that is not to be. Chronic illness sucks but something like this scares me even more... and until I know what I am facing I guess this fear will just keep me paralyzed.

See, it's my philosophy that as long as I don't know it's something terrible, I can pretend it's not. But the minute they sit me down to deliver news of something awful, I'm going to snap and just go into one irreversible panic attack. I just can't deal with it. Fear is awful.

And it's not getting any better. I keep telling myself it's just a pinched nerve, but there's a strange "fullness" on that side of my abdomen that makes sitting or bending uncomfortable. Not painful, just feels like when you are really constipated, only I have not had that issue in several days.

Ideally I would like to find out that it's a benign cyst that they can empty with a needle and I don't have to have surgery, chemo, radiation or anything else.

I'm just so freaking scared though...thinking about everyone I have lost to cancer in my life and how it seemed quite painful in the end.

I'll know more next week, so I'll be certain to post the good, the bad and the ugly.

Stay tuned. (What a cliff hanger, eh?)

OMG IT's TRUE!! The advisory board recommended approval of FTY720!

http://www.prnewswire.com/news-releases/fda-advisory-committee-unanimously-recommends-approval-of-novartis-investigational-treatment-fty720-to-treat-relapsing-remitting-ms-96104399.html

I just got this as a comment -- THANKS KIM and LF!

Oh, and I forgot...

One of the other symptoms I've been having is short term memory loss.

I have always been kind of an airhead that spaces stuff out, but I have been COMPLETELY and thoroughly forgetting entire conversations and other important stuff lately.

I have to write copious notes and then REMEMBER to read them.

I'll have to mention that at my appointment....

...I hope I don't forget.

News on Gilenia, Fingolimod, FTY720

I'm slacking again, I know, I know.

There's news out and I haven't yet reported it...
http://www.novartis.com/newsroom/media-releases/en/2010/1418321.shtml

FDA has extended the review period by another 3 months pushing the expected approval date from June 21 to Sept.

I know this is disappointing to some and I feel bad for those who are eager to give Fingo a try, but for me it's another 3 months of free meds for certain.

I really don't know what I'll do if they take this stuff away.

That said, I do suspect that I am currently in a relapse. I'll know for certain in a week or two when I go to my next checkup. I say that I suspect it due to having reduced sensation in the bottoms of both feet, kind of like wearing socks when I'm really barefoot. I also have this odd Lehrmitte's type of buzzing, shocking sensation that runs from my groin down the front of my thigh and for an instant I lose all control of that leg. I don't know if it's truly Lehrmitte's though as I don't feel it's caused by a lesion in my cervical spine. The position or movement of my head seems not to affect it at all.

It's not a constant pain but a fleeting symptom that comes without warning and has caused me to fall several times, usually at inopportune moments (but when is it ever okay to fall just because you had nothing else planned at that moment?).

Beyond that, spasticity has returned to haunt my daily movements. My legs seem stiff and pained just about constantly although I can make myself ignore it.

I think that Fingo has kept the symptoms of this relapse -- if indeed that's what this is -- to such a minimum that it has allowed me to convince myself that I'm just having a bad day today" and not really relapsing. But it just dawned on me the other day that I have been having these bad days for a few weeks straight.

It's not the knock down, drag out, kind of relapse that punches you in the gut and lets you know it means business. I'm not trying to find what I did with my cane. I just feel "off". If that's a relapse, then I can live with it.

Better than the old ones that caused me to reflect on whether life really was worth living. Many was the time I suspected not.

So, I leave you today with this thought... If a relapse falls in the forest and nobody's paying attention to it, did it really happen?

I guess only my MRI tech knows for sure.

I hope they don't make me get in that thing...

OH, HAPPY DAY AFTER WORLD MS DAY! (always fashionably late to the party. sigh.)

For the Love of Oreganato Bread

My father, who passed away in 2000, was an avid baker. It was his hobby, his passion, to cook and bake exquisite concoctions to please his family and friends. His specialty was bread.

He once had to spend more than a month in a Skilled Nursing Unit at the hospital after having a hip replacement. They had an activities director who did things with the patients to keep their spirits up and to get them socializing. One day she brought a bread machine in and made fresh bread for everyone.

Dad saw what a profound effect a simple thing like fresh baked bread could have on the spirits of the patients that he vowed to bake for them every week when he got out. Of course, he did it the old fashioned way, not with a lowly bread machine. "You can't get the love worked into the loaf if you're not kneading it by hand", he would say.

That was 10 years before he passed away, and for 10 years everyone looked forward to his weekly, sometimes twice weekly, visits bearing gifts of bread, still warm from the oven.

Faculty would flock from all over the hospital for a crumb of his loaves. And the patients would break out in smiles at the site of him coming in the door with his big brown grocery bags.

He never asked for a thing in return. He paid for it all out of his own pocket. His reward was the satisfaction in seeing so many people smile.

They loved him.

After he died, I visited the SNU and brought a gift of my own brown bag full of loaves made from his recipes. The staff embraced me and cried with me as they let me know how much my father had brightened their lives and touched their hearts with his simple homemade gift.

I wanted so badly to carry on the tradition but it hurt too much to try. So I only bake bread for family on special occasions.

I now live in his home and every day I use the counters, stove, oven and sink where all those loaves were made. I think about it often.
I found his bread book the other day and, although he's been gone for 10 years now, I cried when I saw all his handwritten notes.

This Oreganato was my mother's favorite of all his bread recipes, so I surprised her the other night when I baked two loaves for her.

She had mentioned in passing that she had to start eating store bought bagels after Dad died because she didn't have any homemade bread any more. I'm not making any promises out loud, but I think it's time I brought a little of Dad back to the kitchen and kept the bread making tradition going.

Oreganato Bread

Makes 2 1.5lb loaves

A brightly spiced and herbed French-style bread (it contains no oil, milk or sweeteners), especially good when served with seafood or pasta dishes, Oreganato is seasoned with cracked black peppercorns, garlic, parsley and oregano and it sparkles with a golden glint of polenta nuggets. It's important to use polenta which is course, rather than cornmeal which is fine, because polenta retains its identity in the loaf.

8 cups high-gluten bread flour or unbleached all-purpose flour
3/4 C uncooked polenta
4 tsp. granulated garlic or 4 Tbsp. crushed fresh garlic
6 tsp. dried parsley flakes or 6 Tbsp chopped fresh parsley
4 tsp. dried oregano or 4 Tbsp fresh, chopped oregano
2 tsp. coarsely cracked black pepper (this can be omitted or you can use reg. black pepper if you don't like it quite so hot)
2 Tbsp instant yeast or 2.5 tablespoons active dry yeast (proof active dry yeast first in 4Tbsp lukewarm water)
2 Tbsp sea salt
Approximately 2 3/4 - 3 cups water

Mixing and Kneading
Mix all of the dry ingredients including the yeast together in a bowl, then add the water, saving some for the final adjustments. Turn the mixture out onto a floured counter and knead for 10-15 min. or untilo the dough is elastic yet firm, tacky but not sticky. Enjoy the garlic and herb bouquet while you knead.

Proofing and Forming Loaves
Return the dough to a clean bowl, cover it with a damp towel or plastic wrap or slip the bowl into a plastic bag.
Allow it to rise for 1.5 hrs. at room temperature for the first rise.
Punch down and knead gently for 5 minutes.
If you are making pan loaves, form them into loaves and allow the loaves to rise in the pans for an additional hour.
If you are making free-standing French loaves, allow the dough to rise in the bowl once more for an hour, then follow the instructions below for forming loaves.

Forming French Loaves
Cut the dough into 4 pieces to make baguettes.
Roll out each piece of dough into a long rectangle.
Fold it into thirds, from top to bottom, and roll it out again, keeping the seam on the bottom.
Fold the rectangle of dough in thirds again, crimping the seam with your fingers so that it will not open up.
The goal is to create a firm surface tension that allows the bread to rise rather than spread out sideways. If the dough becomes too tough to roll out, allow it to rest, covered, for about 3-5 min. This lets the gluten relax and then the dough should be more compliant. If it begins to dry out, spray it with water.

Sprinkle a baking pan or French bread molds (curved metal cylinders) with polenta to prevent the dough from sticking and to give a nice crackle to the bottom of the loaf. Do not oil the pan as this will brown the bottom of the loaf prematurely.
Place the baguette seam side down on the pan.