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?)


the queen said...

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.

Anne P said...


Please try not to let this ruin your weekend. Worrying and stressing are totally unproductive activities. You're not going to know anything before next week, so in the meantime just try to push it as far back in your thoughts as possible, ok? Please?

Diane J Standiford said...

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.

Starfishing said...

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!

TickledPink said...

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.

k said...

1st, thank you for being a "lab rat" for MS. Fingolimod sounds encouraging and I really hope it is an answer for many MS sufferers. You inquire often about how you'll afford the drug after it's FDA approval. There will probably be a financial assistance program, just like there is for all the other CRAB drugs and Ampyra. You might have to submit income info, but hassle is well worth it. You will need to see a neurologist to get it prescribed, so will have to pay for that & blood work every 6 - 12 mos. You're disease can be followed 'clinically', w/o an MRI, but don't know what the protocol will be after the Tysabri scare.

Your latest symptom doesn't sound typical for MS, but I've learned that doesn't mean it's not from MS. I've had the "banding" around my ribcage (mentioned by 'the queen') so bad I could hardly breath (mine was from muscle spasticity ... and the neuros I used to see all blew me off).

But since the onset of my MS, a lot of my symptoms are atypical &/or still have never been explained. I've been shuffled around to drs. who just rule out something worse. Some I've had to learn how to deal w/ the the best I can & chalk it up to MS. I hope your symptom stops and it turns out to be nothing. Try not to stress & worry, but I hope you don't ignore if things get worse.

On another note, please try to be thankful your MS is so mild and you have RRMS. I'm not as fortunate. I'm a 6.5 on the EDS(SPMS), a friend is a 9.0 - it's bad - (PPMS), another is a 5.0, and a relative (by marriage, not genetics) has uncontrolled Rapidly Progressing RRMS. Wierd, since we met before any of us had MS, but I digress. We are all in our 30's & 40's. I have a 10 year old daughter who doesn't remember her mom ever walking.

I feel like I've been through hell on earth. I've been in CCU/ICU 3 times ... all directly related to MS, have a baclofen pump surgically implanted because my spasticity is SO bad, & have a 3rd pacemaker (#1 & #2 were removed because of infections, both in the 1st year). Only reason I needed it to begin with is all the meds neurologists (2 idiots) had me on at the onset of my illness 9 years ago ... messed with my blood pressure & heartbeat. So, can't be followed w/ MRI's (limits possibilities for even being put on any new DM therapies).

Steroids don't work on me anymore (the inflammatory response in the body changes in later stages) and have had chemo for my MS to try slowing it's progression. I have a mediport implanted for access to a vein, since my veins are shot from steroids. Don't remember how many times I've been hospitalized for relapses, kidney infections (10 days of IV antibiotics), & inpatient rehab. Doesn't include all the outpatient cr**. All only in the past 8 years.

The disease sucks and finding meds that limit progression, relieve symptoms, & ultimately cure MS are soooo important!!! (I'd have gone & would go nuts w/o baclofen & Neurontin in my system 24/7.)

Dealing with MS, I suppose we all look for an outlet. Athough this may sound harsh, please don't complain so much on your blog. Most of us are looking for hope and it sounds like you've found it with this drug! I'd love to be a 1.0, and be able to walk 500 ft (10 ft.!!!)... and so would a lot of other MS sufferers.

MS is not the same for any two people. (There are drs. I'd like to send home w/ it for just one day!!!) We all suffer in our own way, and each disease course is different.

But, I'd rather be where I am than where my friend who is suffering so terribly with a 9.0 EDSS and PPMS. It can be an awful disease and it sucks. It steals us from life both physically and mentally.

Good luck with your MS and the new drug. I hope it helps many and that a cure is found, soon for all of us.


the queen said...

Kim - you're right, there are thousands of slices of the MS pie, not the RRMS / PPMS / SPMS slices we're used to. I'm reminded of the day before yesterday when I was sitting with three co-workers, and I shrugged off my MS and found 2 people had mothers who had died of it and the other's best friend had died from it two years ago. So, not complaining about the MS can be awkward too!