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.

Some days you can't escape the things that bother you

As illustrated by this dog, tormented by his own shadow (there's a couple F-bombs in the audio, so watch out for young ears).



It's like trying to escape or confront the *shadow* of MS... only way more funny.

Gilenia(R)* (FTY720) shown to reduce relapse rates regardless of treatment history

Read the whole press release

An excerpt of the part about the TRANSFORMS trial:

Of the 1153 patients who participated in the one-year TRANSFORMS study, 1027 (89%) elected to enter the one-year extension study. Patients in the extension study who also received Gilenia in the core study remained on their original dose (0.5 mg or 1.25 mg), while patients who had received intramuscular interferon beta-1a (Avonex^®) were randomized to receive Gilenia 0.5 mg or 1.25 mg[2].

Patients who received Gilenia 0.5 mg for two years experienced a consistently low ARR at year one (0.16) and at year two (0.18). These patients also retained a significant reduction in relapses and MRI brain lesions over two years compared to the group originally randomized to intramuscular interferon beta-1a and later switched to Gilenia[2].

In the subset of patients who received intramuscular interferon beta-1a during year one and Gilenia 0.5 mg during year two, the annual relapse rate in year two was reduced by 31% and the number of new or newly enlarged T2 lesions in the brain, a marker of disease activity, was reduced by 67% in the second year[2].

These findings on efficacy are consistent with those of the one-year core TRANSFORMS study demonstrating Gilenia significantly reduced annualized relapse rates by 52% (0.5 mg dose) vs. intramuscular interferon beta-1a[3].

This is such awesome news! I was just explaining to my son this morning how close I was to suicide before this opportunity came along. I wanted him to know that no matter how bad things may seem in life, the situations we find ourselves in are fleeting, but death is permanent. If I had chosen suicide, I would have deprived myself -- an my family -- of these wonderful last three years that I had no idea would be such a vast improvement for me health wise.

You just never know where your rainbow is going to come from...Gilenia (Fingolimod) is mine. :-)