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!