Re: Needing Hope
- From: "Jennifer" <jpnospam@xxxxxxx>
- Date: Mon, 27 Aug 2007 12:46:01 GMT
Eric,
I was diagnosed based on my symptoms alone. It was a very quick diagnosis made within a month of my first attack. Other illnesses were ruled out, and MRI showed no lesions but then I had it done again and it showed 1 lesion. I'm grateful it was a quick diagnosis and I was able to start on meds right away.
Jen
<IMSum1good@xxxxxxxxxxxxxx> wrote in message news:1188216347.099835.183460@xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
On Aug 27, 5:38 am, "Michael I" <rightacti...@xxxxxxxxxxx> wrote:"Joanie G." <joanie19...@xxxxxxxxx> wrote in message
news:Xns9998E7B2CE432joanie19046@xxxxxxxxxxxxxxxxx
> Please forgive my lack of proper terminology.
> I am very new to all of this.
> Has anyone ever had a relapse where they lost
> the ability to walk and then regained it to some degree?
Yes. I know of such people. One is a professor of nursing,
no less.
> My 38 year old sister who recently moved 2,000 miles
> away has just been diagnosed 10 days ago with MS.
> She woke up one morning and could not walk.
The professor I just mentioned had just such a blow-out
(that's my own term for such a severe attack) after a
relapsing-remitting course of the disease in which
her attacks (exacerbations, relapses) were mild and
infrequent. After several months of paralysis, her MS
symptoms began to go into partial remission and she
could walk again with the help of a Canadian crutch.
She may have replaced that with a cane by now.
An aunt of mine (to whom I am only related by marriage)
has come back from an equally crippling attack more
than once. She uses leg braces instead of a cane to walk
and hides them by wearing long dresses. She does tire
easily and cannot stand for significant periods without
the help of a cane. This woman is the prototypical strong-
willed person and treats her situation as an impediment
to be gotten around rather than an infirmity that is
inescapable.
The usual treatment for an attack as severe as your
sister's, Joanie G., is a course of in-hospital intravenous
treatment with a powerful steroid drug that may last --
possibly -- for weeks. The purpose of this treatment
is to halt the immune system behavior that is causing
the nerve injury responsible for the paralysis. The
sooner the process of nerve injury is halted, the better
the prospects for your sister's recovery of her now lost
nerve function that is causing her symptoms of paralysis.
One of the hospital's practitioners can fill you in on
whatever side-effects of the treatment your sister is
experiencing; heavy-dose steroid treatments often
have severe side-effects during the treatment period,
including emotional and psychological side-effects.
An attack as severe and sudden as your sister's and
a diagnosis of a lifetime chronic disease is a
frightening experience. Your sister's feelings of
despair are a common response to such depressing
news. A steroid treatment may well deepen those
feelings of despair. I hope your sister has visits,
phone calls, cards and letters from her friends, family,
fellow church-goers, and co-workers. Homemade
cards with pictures drawn in crayon from tiny nieces
and nephews are also heartening.
In the United States, the National Multiple Sclerosis
Society is a good first place for seeking information
about the disease. Try:http://www.nmss.org
on the Web or telephone 1-800-FIGHT-MS to speak
to a live person. They can give you a referral to
a patient advocate in your sister's area or to their
counterpart organization if she's outside the USA.
If your sister attended religious services, the pastor
or rabbi could be of great assistance to her now and
also when she leaves the hospital and requires living
assistance until she can re-establish herself. If she
was too new in town to have established a relationship
with a congregation, you could try contacting a religious
congregation affiliated with the one you attend that is
near her hospital and enlist their help. The hospital's
chaplain could perhaps help you with that. After your
sister leaves the hospital, she will need help with a
place to live now that she's lost her apartment and
the charitable arm of a local church or synagogue
Diagnosing MS in a person is often difficult, especially
if the person's exacerbations are relatively mild
or involve a different nerve function at each exacerbation,
and go into complete remission very quickly after
a neurological event is noticed by the person. Seeing
a different doctor each time, perhaps because the person
travels or relocates frequently and does not have an
ongoing relationship with one physician can also
make diagnosis difficult because no one doctor sees
the person's entire set of often puzzling symptoms.
(Actress Teri Garr's MS escaped diagnosis this way
for about two decades.)
Here's another ray of hope that your sister's outcome
may not be as devastating as it now appears: People
whose first known (even if only discovered in hindsight
after diagnosis) MS attack was relatively mild and
speedily went into remission are highly likely to have
the least-bad form of the disease, called relapsing-
remitting (RR) MS. One more bit of hope I can share
with you, although only anecdotal, is that among people
with MS that I know who have had huge blow-outs,
the women are the ones whose subsequent recoveries
are the most dramatic.
Your sister has my best wishes for her recovery
and I wish you well too.
--
So long as we are loved by others
I should say that we are almost indispensable;
and no man is useless while he has a friend.
Robert Louis Stevenson
I am far from an expert on this. (Except for the fact that I have
paid attention to it for 20 years now as I received MY diagnosis in
1987.)
I do know that many people have suffered for long times with very
dramatic symptoms which they NOW understand to be M.S. but which went
undiagnosed for a long time as their Doctors were, well, inept. It
seems unusual to have an attack and be diagnosed all at once. Maybe
the tide has turned and they are jumping the gun???
As far as I know, it is still a "clinical" diagnosis, made through
long observation and someone may be jumping the gun. It's literal
Latin meaning is Multiple Scars and someone can have an autopsy done
at 90 and many scars be found in their Nervous System.
I suspect there re a lot of Doctors out there who would like to be
"House. " much like I played Doctor for a long time. (And I don't
mean with girls... I mean I used to look every term up on the Internet
and try to understand.)
It IS important to understand your symptoms, but it is much more
important to find a good Neurologist whom you can trust and then
follow their direction.
There are too many other things which mimic it.
I wish you and your sister luck. Sounds like in any case you have a
long road ahead. Of this I am sure... Just about everyone you will
meet here knows about long roads.
Good luck and find reasons to smile anyway. It is definitely a better
medicine than anything out there.
Eric
.
- References:
- Needing Hope
- From: Joanie G.
- Re: Needing Hope
- From: Michael I
- Re: Needing Hope
- From: IMSum1good@xxxxxxxxxxxxxx
- Needing Hope
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