So, I had my follow-up neuro appointment Friday morning.
best, but I think he really wants to do something to alleviate his own
worry. I'd wanted him to sit with me during one of the IVSM treatments
last week, where there's a little more action, but that didn't work out.
- Toe taps, L and R [“That's better!” but still not perfect]
- Scratch test: back, tummy, and soles [better on back, a little better on foot, still really numb on right tummy]
- Reflexes, all [the right knee is still a bigger kick than the left, as is the right sole]
- MRI: there's a “big lesion” in my cervical spinal cord and “abnormal involvement” in my brain.
- Spinal cord: “We can't rule out a tumor without a biopsy, but when
looked at with your symptoms, we don't think that's what it is. We'll
monitor it.” Uhh…thanks?!
- Brain: there are “several white spots” on the brain MRI. “If you were 80,
they'd be normal. But you're only 26, so we're going to watch these.”
- Lumbar puncture: no specific mention of O-bands, so I assume I didn't have
2 or more, which would be enough for a diagnosis. He did say, however,
that it did show “evidence of inflammation,” which is in keeping with
MS and other similar autoimmune diseases.
- IVSM (steroid treatment): we could both tell I had some improvement after the
treatment last week. I'm happier being able to walk more steadily,
faster, and farther, and I know Lula appreciates going on real walks
again. Dr. O seemed cheered
by the change, as well. I aim to please!
like he really wanted me to be able to describe one, because that would
knock us off the fence into definite MS.
19) and another follow-up appointment a few weeks after that. If there are any
changes (new white spots, or larger ones), I'll get diagnosed. At that
point, we'll discuss my treatment options.
for rarer forms of lupus, which could conceivably mimic MS and account
for my symptoms. Dr. O didn't think to this was a likely scenario,
since my basic lupus screens have all come back negative, but he's very
thorough and conservative.
now, if I felt strongly that I should. He feels we have time to wait a
little longer and see what shapes up — I'm compelled to agree with
him, though I really appreciate his seeking my input on the matter.
They're all injections – some daily, some weekly or a few times a
week. At best, they have about a 30% chance of putting off or
diminishing the effects of future exacerbations. Oh yeah, and they all
cost $1800 a month or more. (My insurance might cover some/all of
that, but I'm not going to ask until I absolutely have to!)
More waiting! Life goes on, and I try to keep the darker thoughts
away. Like, in 3 months, my brain might have more holes in it.
(I am what I eat, and I'm turning into swiss cheese!) Or, more bittersweet — if I
have a flare up in less than 3 months, I'll get a diagnosis! Less wait, worse
crap to deal with — a bargain with the devil, to be sure.
I don't know how often I'll be updating while I wait for the next MRIs. In a way, no news is good news. To keep from having to check in daily (the horror!), subscribe to the RSS feed using the link in the left column, or click here for email notification.
Thanks to all for your good wishes. I've never been so prayed about in my life, and I can swear it's working. At the least, it's very flattering, so keep it up.