Re: Heat & TM

sjhanan(AT)e-z.net
Tue, 06 May 1997 18:30:34 -0700

Deborah Capen wrote:
>
> Hi group,
> And what a group we are becoming! So many new people!
> I have a question. In the last few weeks, I have been away, first I flew
> back to Michigan, rode to Shipshewana, Indiana, flew back, all on my own.
> (Major accomplishment for me.)
>
> Of course, I know that I overdid it, and this could be one factor. Lack of
> sleep, too much walking, because I was proud of the fact that I could
> actually walk, and didn't want to slow the group down, so walked as fast as
> I could without tripping over my own feet.
>
> My problem right now is that my left ankle (the leg and foot that are still
> very hypersensitive, that foot still basically floppy and useless) has
> swollen, especially in the evening, but all day today. I look like I have
> inflated an innertube around my ankle. The right ankle is swollen
> slightly, but not as badly as the left.
>
> I have also been talking to several people in the nursing field recently in
> my travels, who know people that have lived in hot climates, and did not do
> well with their TM, then people that moved as far north as Alaska, and have
> little or no problem with their TM.
> I live in California one week, Arizona the next week. We are bi-state, so
> to speak. It is 100 degrees in Arizona right now, 80's in the inland
> valleys of California. So could this swelling have anything to do with
> walking, which will go away if I take it easy, or is this something that I
> am going to have to live with all summer long, because of living in the
> sunbelt region?
>
> Anybody else live down south, or in the heat that is having this swelling
> problem?
>
> I am going to my neurologist tomorrow, and am going to start on a note
> sheet of questions, which I have not had time to sit and write down,
> because when I can take it easy I am so fatigued, I just fall asleep and my
> notes don't get done. But I am curious right now, and know I can get some
> answers from you out there in cyberspace.
> Thanks,
> Debbie

Hi,.....I've been wondering if anyone else experienced swelling in their
affected limbs? In 1981 I had my attack of TM, [that's what the doctors
are calling it now] I was left with residual swelling in my right hand.
We tried extensive PT to try and bring it back to normal, as well as my
legs, which did respond well, and I was able to walk out of the hospital
after 10 days. I was given a "possible" dx of MS. For the next 10 years
I lead a pretty active life, playing tennis, walking, teaching school,
and raising my family. I had "episodes" of down time, and a couple times
lost my walking, but it always came back. My r. arm and hand never has
returned to full usage. The swelling has been continual, but in the
beginning years I could still write, and I forced myself to use it as
much as possible. Sometimes then it felt like a nerve was being
pinched, and the numbness and swelling would increase, and ache. It has
now pretty much quit on me, and I only use it to assist my left
hand/arm. It's still swollen, and numb. I have to concentrate pretty
intense to hold on to anything. [but, I don't want to give up using it
altogether]
From 1991 until now my right leg developed problems. I don't know if
this was precipitated by "another" attack of TM, or what? [I'm in the
middle of more tests to rule out MS] I was given a dx of MS in '94, but
I was never satisfied with it. There was always some nagging thoughts
about, how could it be MS if I only have 1 lesion?
Now, since my legs are affected, my right foot has developed a drop, and
a permanent contracture. This last year, it also has developed alot of
swelling. I contributed this to my monthly cycle [sorry, guys :)].
During this time EVERY symptom I have is intensified.
I've never had double vision, but I do have a hard time following fast
movements. I am constantly asking my husband to slowwww down when he is
going below the speed limit. Going around corners just about kills me, I
feel so off balance.
I also have a tremendous amount of whole body pain, but we're trying to
decide if that's caused by fibromyalgia, or TM.
I'm being seen by an MS expert at Oregon Health Science University, and
she is leaning more towards the TM, than the MS because of having only 1
lesion. I've had another MRI of my brain last week, and I go for Evoked
Potentials Thurs.
There's always been these weird little symptoms that come and go, that
no ones been able to explain to me. Could someone explain to me what
"tone" means? Is it the same as a muscle spasm, or contraction.
I know this is a long letter, I hope you all don't mind? [easier than
writing a dozen] :)
Smiles from Jackie/Vancouver, Wa.
p/s humid heat causes my arms/legs to turn to jelly, and fatigue is
pretty intense. I can go in a hot-tub just for a little while, 10 mins.
max. [95-98 degrees]