I woke up on friday with my body going
into a flare.
so, after calling my immunologist (who is
awesome!), I got worked into the clinic
today. I was there for 5 hours!!!!
At the end of it all, it was decided that
I needed the following:
neuropsychiatric testing: I have been
experiencing memory loss, not able to find
words while speaking and previously I
actually forgot how to speak or understand
english (my native language!).
Ecocardiogram: I have been having severe
chest pain with it running down my left
arm.
Mri/mra: this will be my 4th mri/mra. See
the items under neuropsychiatric testing
has anyone had any of the first two tests?
If so, how were they?
Any feedback would help!
Ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Lady Brannon Posted: 08-26-03 22:24pm
I also have been having some memery loss
lately. I was wondering if I was going
nuts! I notice it a few weeks ago. It
scares me because I take care of my
husband and I have to do the (
remembering) in our house due to his
illness. I have trouble remembering every
day things. I have always had a very good
memory, thats why I noticed this was not
like me to have this happen to me. I also
noticed lately my brain is not getting the
message to my body parts soon enough. For
example-like now I knew what I was going
to say but before I finished typeing for
example I forgot! Also, you know how on
tv sometimes they get the person talking,
but the sound is delayed so itis off que.
Thats how i've felt lately. Weird! I
haven't heard of those test before.
Explain again where you go when you have a
flare up? All they have ever done for me
is give me an i.V. And bed rest for a few
days that dosen't always do the trick.
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Sharon Posted: 09-02-03 18:51pm
See a neurologist! It cannot hurt, you
know?
Yes, I do know what you mean. Yesterday,
when driving back from atlanta, I tried to
get out of a moving car (80 mph) because
my brain knew I needed to go to the
bathroom. Scared the h&ll out of me
and my hubby!
Let me know what you find out. Also,
about keeping up with you and your
husband...Keep lists everywhere and cross
off as you do each item. It has saved my
sanity!
ladybrannon
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Doctors Posted: 09-02-03 22:47pm
Hi lady brannon,wellcome back I had a very good
nero. Doctor in texas. The one I first
saw here was a jerk!!! I haven't looked
for another one yet. I'll ask my rheu.
For a referral.I will see him on the 16th.
I've never trid to get out of a moving
vehicle yet. That would have scared me
too! Now i'm glad I always lock my door
when I get in my truck. My husband thinks
i'm being silly. Be carefull out there.
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Sharon Posted: 09-03-03 11:06am
Hi there!
You know...I think you can get a list of
doctors in your area from the lfa's
website.
I had the neuropsych testing, after
experiencing similar memory loss and
problems with word-finding, etc. It was
about 8 hours with a neuropsychologist
(four hours each on two successive days).
He first took a detailed history (life,
education, medical, and symptoms leading
to the testing). Then he gave me a series
of tests, like saying a list of words and
asking me to repeat them; saying a list
of numbers and asking me to repeat them
backwards; telling a story and asking me
to tell it back to him. The tests were
easy and there's no need to be nervous.
It reminded me of grade school. There
were other components, too, but don't
worry about any of it. You don't pass or
fail. Your performance helps show the
psychologist if there are specific parts
of your brain which are not functioning
normally.
After a month, I got the results, which
basically said that I was very depressed!
Of course, we already knew that! The
problem is "central nervous system lupus"
isn't always picked up in mris, mras or
neuropsych testing. They can tell you if
they see it, but it can also be there
without any tests showing it
definitively.
Final note: my testing was in february
2003. In august, my confusion deepened,
and my doctor took me off neurontin and
reduced my dose of imuran from 3 to 1 per
day. Interestingly, my mind got clearer!
So perhaps when we suspect our brains,
it's side effects of the multitude of
drugs that we're on!
Hope this was helpful.
Susan
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sharon
Experienced User , Rather EHEALTHy
Joined: 17 Jul 2003 Posts: 191
Memory Loss Posted: 09-04-03 17:55pm
Hi susan, thanks for sharing your
experance with me. I have been through
the same testing with my husband for his
illness. Thats partly what scares me. I
have been on nortripoline before and I
refuse to take it now. Thats part of why
it's so frustrating to tell the doctors
what's bothering me. They want to put me
on all these meds and because of all the
side affects, I don't want to take them.
What is a girl to do
Sharon
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
to Susan Posted: 09-04-03 18:04pm
Thanks susan...Ironically enough they
called me today to set up my testing date.
I guess i'm not that scared just worried,
you know? Today, I opened the oven and
tried to pull it out without a mit on...
I think I am losing my mind.
i know that my mris/mras in the past have
showed a small change and that I do have
mild neuropathy...
I just want to feel better...At one time,
I was one of the brightest students in my
state (captain of the state winning quiz
bowl team in 1992). Now, I don't trust
myself to get into a car without locking
the doors.
Argh!
Thanks so much, susan...Sharon. You guys
are great!
Ladybrannon
