Friday, July 2, 2010

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?)

4 comments:

  1. Huh, I've had that twice. Once I descibed it as having a nerf football wedged under my ribcage. The other time it was on both sides, and of course that was the classic "torso band."

    And why couldn't you have Lhermittes sign on other nerves?

    Is Biogen paying for all these tests? If so, hey, free tests.

    ReplyDelete
  2. Oh I hate that fear feeling and the damn waiting. "Ovarian cancer??" That seems like a leap from that symptom...a benign tumor or cyst maybe. Talk about scaring a patient. Kidney seems unlikely. (I'm no doctor I've just dealt with many) I remember waiting after seeing a Dr for weird symptoms...I called everyone I knew to ask, this was before WWW, and after WWW I looked up symptoms, one said I had cancer---was just a rash. I feel for ya. Stay strong,i it will be over soon and then you can deal with it. (I hope it is not the new med.) At times like this, hearing it is just MS is not so bad. (But sounds like you have other things involved.) Share your fears here, we are with you.

    ReplyDelete
  3. I know that buzz -- belly button to crotch. My neuro didn't have any trouble believing it was MS. Also had a full GI work-up -- CT, colonoscopy, etc -- even though they were pretty convinced that it was MS when I started having GI problems (it was pretty strange -- I didn't respond at all to the initial prep for the colonoscopy, they when they really ramped up the drugs I felt no cramping or discomfort -- just a mild feeling of pressure, after which my gut obligingly evacuated itself on the toilet. Not normal to not feel anything with a colonoscopy prep -- and very much a sign that the nerves to the gut were being affected by MS, the GI guy said (Who knew? It never occurred to me that MS could hit me there. Happily, after about 4 months my gut returned to normal function (GI specialist said because it was MS, diet would be a lot more useful than drugs/laxatives. Also said it was very important to stay on top of it, as people with MS can get into real trouble when they don't feel significant gut discomfort.) I am lucky to be at a major medical center -- even though sometimes they're insufferable -- because they've seen so much MS I rarely have a symptom that they haven't seen before. Not many places you'd see a GI specialist who's treated lots of MS patients. That said, it's still important to do the other "ruling out" tests, too. So hang in there -- and remember that when they can't come up with a good explanation for a symptom, but say it's not MS, then it probably IS MS!

    ReplyDelete
  4. Thanks for all the comments. Sometimes I just can't believe that I'm actually in a clinical trial as much of a hypochondriac as I am. LOL

    Tomorrow is blood draw and CTs. Friday is consult about colonoscopy.

    For the past couple days I have actually started feeling somewhat better so that's a promising sign. Still, I will endure the poking and prodding to rule stuff out just the same.

    ReplyDelete