Friday, August 26, 2011

Could it finally be a MS relapse? Not earth shattering if it is...

I sat down with my pocket calendar and worked backwards, grabbing some dates from memory and some from my older blog entries. I think this has been going on for nearly a month.

It all started back around the beginning of  this month when I woke up one day and was sick to my stomach and so dizzy that I actually had to crawl to the bathroom to throw up. The dizziness scared the heck out of me (I've had it as a MS symptom in the past and DISlike it very much).

So I spent the day in bed  with a bucket beside me "just in case". I ate nothing and slept as much as I could. I took my temperature and it was absolutely normal. I sure felt like I had some kind of awful stomach bug but I didn't know you could have that without an accompanying fever. huh.

Turned out it was a 24hr thing. The dizziness was gone the next day along with the nausea, and I was back to eating. The only thing left behind in its wake was an overwhelming fatigue. The kind that pins you to the bed and won't let you up. The kind that increases gravity 10-fold and causes even the most mundane tasks to seem utterly insurmountable. I spent most of that week in bed, coming out only to force myself to do those things I could not avoid. We ate a lot of Tuna Helper and ham sandwiches during that time.

By the end of the week I was starting to get over the fatigue when I ended up having to make a trip to the ER. Not for me, but for my son who had been stung by a wasp for the first time and we all found out he apparently inherited not only his left-handedness from me, but my severe allergies to stinging bugs.

Maybe it was the stress of that day on top of the fatigue I'd been battling right after that awful stomach thing, but soon other little symptoms began raising their ugly heads. Try as I might, they refused to be ignored.

I was having intermittent numbness in my lower legs and feet as well as in my hands, coupled with burning pains and spasms. The severity of each symptom seemed to directly correlate to the amount of rest I had received during the previous 24 hour period.

Not wanting to admit that my beloved Fingolimod (a/k/a/ Gilenya) could ever let me down, I have been reverting back to my mindset of DENIAL as I remember from the first year or so immediately following my diagnosis back in 1999.

"Oh I'm just a little tired," and  "Maybe I'm coming down with something," were my two mantras looping through my head for the past couple of weeks.

But things are getting worse instead of better and demand my attention, refusing to be ignored.

That weird, buzzing, funny-bone-wacking sensation I experience for three months last summer (and despite extensive testing, no cause could be found) has mysteriously returned. This is such an odd thing I can't imagine even doctors being able to visualize or understand just what sensation I am experiencing. The closest I can come is this: I suddenly, randomly, and with no forewarning intermittently experience this odd sensation where my leg meets my body, at the groin area that feels like your elbow does if you wack it horribly on the nerve. There is ferocious buzzing and tingling while the surrounding muscles contract in a fit of spasms. My leg will contract and go out from under me.

So now I know right where my cane is after all these years. Within easy reach, that's where. I have come close to falling a couple times in the past few weeks because of this weird buzzing groin thing yanking my leg out from under me, so I'm not taking any chances.  I still see the scar from the gash I got last time I fell on my face every time I look in the mirror. I don't need to kiss the ground again, thank you.

The buzzing groin was an enigma last year. The clinical trial people pooh-poohed my questioning of whether or not it could be MS, and my primary care doc wore himself out dreaming up new ways to figure out what was going on. When an x-ray, a CT and an ultrasound revealed my only problem was that I was full of crap (literally, I had a constipation issue that amplified the groin buzz issue) I drew the line at getting the upyerasscopy.

Later, at the first neuro visit I had since exiting the study, Dr. Whosenameiforget told me it could DEFINITELY have been MS related and when I said it was worse when I was constipated he nodded, saying it made sense. There are nerves that travel through that area that come out of the spine, go through the groin and down the leg. With a full lower intestine and colon, the pressure placed on the nerve would be increased. He could easily see how it was a nerve thing and most likely MS.

Not to mention the fact that last year it mysteriously disappeared after never showing on any diagnostic test and was gone completely after 3 months... coincidentally the length of time it normally takes me to recover from a MS attack (if memory serves me).

Referring to my pocket calendar, let's see what else has been going on...

  • Eye twitching but I get that a lot anyhow if stressed or tired or mad (if you think you've ticked me off but don't know  for sure, just look me in the eyes. You can bet I'm NOT winking at you!)
  • Itching. Itching on my head, neck, side of torso, middle of my back. And never all at once, and never satiated by scratching. Back before the trial I could always tell when a new flare was coming on and guess the location of the lesion within several inches because of where the incessant itching was located.
  • Numbness in feet. Sort of feels like I have rubber gloves on them. Can feel cold/hot, but not especially fine sensations.
  • Tenderness in my left armpit and across the collar bone like I imagine where parts of  my lymphatic system reside.
  • When I lay down to go to bed at night my legs start jumping and twitching. It's a weird feeling. I can tell when it's going to happen because sometimes I get this stinging sensation like an ant bit me somewhere on my upper thigh or hip, and then within seconds my leg will jerk. If I wasn't so overly tired and wanting to go to sleep I might be amused and entertained by it, but mostly I find it annoying.
All in all it's a really wimpy list of symptoms, none of which are so earth shattering that I feel a need to go lie in a 8 foot MRI tube and get shot up with contrast dye to have them just say "yep, it's MS".

Besides, all they'd do is offer me steroids and I am so much happier to deal with these minor annoyances than I would be to deal with the roid rage I go through every time. Besides, that stuff makes me eat like there's no tomorrow and I INVENT meal names just so I can eat 6 times a day. "Oh! Look at the time! It's almost Linner! Better hurry and fix it or it will soon be time for Dinner and before you know it Dineakfast!" nom, nom, nom. And the acne, and the camel hump (NOT toe, thank you.), and the insane way my brain won't shut up, and the insomnia, and the weird taste in my mouth, and the unquenchable thirst, and the uncontrollable urge to clean. No thanks.

What I AM going to do is keep documenting my symptoms as this progresses, go see the doc if it really gets out of hand, and then on Sept. 28th when I go see my neuro I will bend his ear about all of this.

I have talked to a couple other folks in the Fingolimod trials who have definitely had relapses while on the drug and they have said what I suspected... you know you are having a relapse but it feels as if Fingo is keeping it in check. Like if not for the drug you might just explode into one of those horrible attacks that knocks your junk in the dirt.

If this IS a relapse and I'm going through the worst of it now, then I can handle it. I have not lost my gratitude for the drug, that's for sure. If anything I know for SURE it's working now. To go with no relapse for all this time could have just been a fluke. To have an attack and have it be so muffled as to leave me wondering if it really IS one, well, that to me speaks volumes about the power of Gilenya.


  1. Aaak! I'm sorry to hear about your relapse! I, too, don't like to hear anything even remotely bad about my precious Gilenya, who hath destroyed the evil needle monster Avonex! And of course I'm so sorry you're not feeling well! I'm recovering from a relapse that began about a week ago, 3 weeks after starting Gilenya. Difficulty walking but nothing terrible, and I seem to be on the mend. I'm going with the theory that I would have had this relapse no matter what, and it would have been worse without Gilenya.

  2. Great attitude, sweet. You're both smart and strong, so you'll wrangle this bout of whatever it is.


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