> I am a 26 year old female who has had 2 attacks of TM in the past 5
> months. Basically, I've spent 4 of the last 5 months in the hospital.
> I just got out of the hospital for the second time and I'm seeing my
> neurologist for a follow-up visit next week. Since getting out of the
> hospital, my strength has improved but I've noticed some strange
> things. First of all, my level of injury is at T-6 and I lost all
> sensory and motor from there down. For the past few days, I've had a
> hard time breathing. It feels like I can't get enough air in my lungs.
> Yesterday, both of my legs felt like they were being burned and
> scraped. It only lasted about 3 minutes but it was the most nauseating
> feeling I've ever felt. Also, my leg muscles feel like they're shaking
> from the inside-out. My lower back pain has progressively gotten worse
> and the only thing my rehab doctor prescribed upon discharge was
> flexeril because she said..."you can't be on percocet forever". The
> problem is that flexeril does nothing for me and they make me feel like
> a junkie for asking for percocet.
> I want to go to my neurologist with a list of good questions but I don't
> know where to begin. Whenever I see a doctor I get nervous and forget
> everything and leave feeling more confused than ever. I'm deathly
> afraid of ANOTHER relapse and I don't want my questions treated
> lightly. I desperately need some advice about what meds to inquire
> about and prevention tactics. Any advice would be greatly appreciated!
>
> Thanks,
> Kara
>
>
Dear Kara,
I know exactly what you mean about getting nervous and forgetting what
you wanted to ask the dr. For that reason, for years I've been writing a
list of questions to take with me and just going down the list with the
doctor. I was afraid at first of being thought a hypochondriac, but that
doesn't seem to be the case. It helps to just have a pad of paper and pen out
where they're handy and jot down questions as they come to mind in the days
and weeks before your appointment rather than trying to come up with them at
one sitting.
I haven't heard of either of the drugs you mentioned -- maybe others can
be of more help here -- but perhaps you could ask what are any problems with
long term usage; are there any other medications you could try; is there
anything else you could try besides medication -- I was thinking of physical
therapy, but you mentioned you had been in rehab -- are there any other tests
that need to be conducted? What are the chances of another relapse? You
might ask how a diagnosis of TM was arrived at, and whether MS was ruled out
-- I'm wondering at having two attacks in such short time. I was told that TM
was a one-time occurrence, but others have also had more than one attack. You
might write down all of your symptoms and give it to the neurologist so he or
she can get the whole picture and perhaps come up with a medicine or
combination of medicines that might help your specific symptoms. Basically
write down any and every question you can think of, even if the answer you
receive is "I don't know." I did this before my last visit and then sent it
in a letter to the neurologist
-- again, being a little fearful of what he'd think. but I had a lot of
concerns and wanted him to get the whole picture of what was going on, and
sometimes it is hard for them to absorb all of what you're saying or asking
verbally at the time. Plus, when they receive a letter like that or see you
with your pad of paper and list of questions, it helps them know you need a
little time. I tried to always be conscious of not taking up too much time
and knowing he had other patients waiting, yet you have to have that time to
get your questions answered. My neurologist has also always been great about
returning calls personally.
Hope this helps some. Let us know how it goes.
Prayerfully,
Barbara