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#Post#: 4352--------------------------------------------------
Upcoming neuro appointment
By: agate Date: March 19, 2024, 1:05 am
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Time for a blogpost even though this isn't a blog.
I have a routine neuro appointment coming up, and I'll be
telling the neuro about the nystagmus episode I had last
October, a couple of hours after getting the super-strength flu
shot.
I hadn't had nystagmus so severely since the late 1970s or so,
and it was just as frightening and show-stopping this time as it
was then. When your eyes are whirling around in your head, you
can "see" colors and shapes but they make no sense. They are
totally meaningless. You are suddenly blinded, in other words.
This used to happen to me when I was walking around. I never was
troubled much by it since getting the wheelchair. I had only a
few such episodes but with each one I had to stop in my tracks
and grope my way to a wall or column, a vertical surface against
which I could lean and immobilize myself totally, resting my
head against that surface, and wait for my eyes to calm down.
After a while--maybe half an hour?--they obligingly did settle
down.
This time, though, I was in my wheelchair and had been in it all
morning. I had had to make some sharp turns, both while in a van
riding home from that flu shot and then on entering the
building. It may have been the turns that triggered the problem.
In the past turning up and down the aisles of a supermarket used
to bring on less severe episodes of the same problem.
So I'll be telling the neuro about this. She probably won't
regard it as an exacerbation since it didn't last the required
24 hours. It lasted only about an hour.
I'm hoping she won't decide that the Glatopa caused it.
However, maybe Glatopa needs to be reconsidered. I misremembered
why I stopped taking Copaxone (another version of glatiramer
acetate = Glatopa) years ago. I refreshed my memory today by
looking up my record.
I stopped taking it because of "bowel urgency." I have been
troubled by "bowel urgency" again in recent months--but had
forgotten that I'd had it before and associated it with the
glatiramer shots.
"Bowel urgency" means the occasional loss of control. It means
frequent trips to the bathroom, sometimes 10 times in a day. I
can cope with this on days when I'm home alone with nothing much
to do but not every day is like that, and furthermore, all of
those bathroom sessions can leave a person very sore.
I looked up Glatopa today and found that, yes indeed, "bowel
urgency" is listed as a possible adverse reaction to it.
So I may be giving it up soon. Tomorrow I will see what the
neuro has to say. She wasn't entirely on board with my resuming
it in the first place.
#Post#: 4353--------------------------------------------------
Farewell to Glatopa
By: agate Date: March 20, 2024, 1:25 am
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The neuro will cancel the rx, and I am enjoying the extra time I
will now have after stopping Glatopa.
When I asked the neuro if she knew of anyone who could use my 6
remaining Glatopa syringes, she allowed as how most of her
patients don't want to do shots and so they aren't using
Glatopa. She said they prefer pills or even infusions.
No more lab work for the neuro will be needed--another block of
time saved. I was having to go for lab tests for her once a year
or so. And unless I opt for an MRI, I won't be going back to her
for another year.
Of course if there's some problem, that will change, but I'm
hoping to avoid problems. She is a specialist, highly trained,
after all, and I see no need to waste her time with the little
problems posed by MS on a daily basis.
Yes, there are many of them, and coping with all of them keeps a
person busy. But it's called multiple sclerosis for a reason.
There are multiple problems.
#Post#: 4372--------------------------------------------------
Update on stopping Glatopa
By: agate Date: April 6, 2024, 1:55 am
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Glatopa isn't one of the MS drugs that need to be tapered off if
the person is discontinuing the treatment, or if it is, I
haven't heard about it.
As with the other time I stopped taking glatiramer acetate
(again after 3 years), I just stopped taking it.
My last Glatopa injection was March 16. That was over 2 weeks
ago, and I have noticed no changes in symptoms to speak of.
Much as I liked the idea of doing whatever I could to keep the
MS from getting worse, I have to admit that I really enjoy
having more time.
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