Somebody Please Tell Me I'm Not Nuts Posted: 11-30-04 00:22am
Hi,
i have been dealing with doctors and
numerous health issues for several years.
The doctors say it's ra, lupus, or some
other connective tissue/autoimmune
disease, but can't determine which. I
have a consistently positive ana but never
have had an elevated ra. Apparently none
of the other tests have shown anything
meaningful. Also, I have a balance
disorder which is either meneire's disease
or migraines associated with vertigo
(probably the latter). I have horrible
fatigue, muscle pain, reynauds syndrome,
headaches, gi problems, low grade fevers
and have had chest pain for 6 months that
they can't diagnose (although they have
done apparently every test known to man).
I am feeling so incredibly isolated and
frustrated. I was supposed to have
follow-up appointments with my 4 doctors,
but haven't made the appointments yet
because they aren't helping me in the
least and I don't have the time to waste.
Everyone around me seems to be abandoning
me emotionally right now and I guess they
think i'm a hypochrondriac or just milking
it all. I keep asking myself if this
could all be in my head, but I don't see
how I could have possibly conjured all
this up. Much less why I would even want
to. Especially since I seem to be a
pretty stable gal. To make matters more
complicated, I work full-time, my husband
is finishing his dissertation, and we have
three young children. I've never really
gotten depressed about this, but I guess I
am now! I just feel like everything is
really slipping away from me. There was a
lot I wanted to do in life, and I really
wonder how much of it i'll get to do
now.
I don't really know what the point of this
e-mail is. I guess there isn't one. Just
a call out to cyperspace to see if anyone
is actually listening. I'm usually not
this pathetic, just having a seriously bad
moment.
Amy
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mia
Experienced User , Rather EHEALTHy
Joined: 25 Jan 2004 Posts: 147 Location: dallas
Amyw Posted: 11-30-04 08:15am
Hi amy, know how you feel, I have been
going through the same thing for 15 years.
The best thing you can do for yourself
is educate yourself as much as possible
through research. I have actually been
able to diagnose things that the doctors
have missed. This is because you only
have yourself to think of, they have
hundreds of patients. The other thing
that is very important, and nearly
impossible, is to get enough rest. This
is very important with auto-immune
disorders, you can make a significant
improvement in your health with an
appropriate amount of rest and a proper
diet.
As to the chest pain, I experienced
something similar called
costochondoititis. You can look this and
any other research info up on the "
national library of medicine.Org"
good luck
mia
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AlisBaby
New User, Becoming EHEALTHy
Joined: 17 Aug 2004 Posts: 19 Location: Virginia
You're Not Alone Posted: 11-30-04 16:00pm
Hi amy,
you're not nuts... Unless the rest of us
are too! This is the frustrating thing
with autoimmune diseases - they're
terribly difficult to diagnose and so many
doctors simply do not understand them.
I'm still undiagnosed too -- although I
think my new rheumy will be the one to
finally put a label on this cluster of
symptoms I deal with daily. My mother
actually told me -- to my face -- that she
thought it was all in my head and caused
by my unhappy marriage.
well, my marriage isn't all that unhappy
and i've dealt with worse problems in my
life without suffering from excrutiating
joint pain as a result -- so I say that's
a bunch of bull-hockey!
know that you're not alone and that
there's always support to be had. I
agree that research is the best approach.
I know that for me, it's helped me hone
in on the symptoms that are significant
and has led me to report things that have
painted a clearer picture for the doc. I
wish you all the best and I would
encourage you to make those appointments.
It takes time to diagnose ai diseases, so
try to hang in there. If you feel that
the docs simply aren't listening or don't
understand your condition, look for one
who will!
All the best,
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sandyallen
Extremely EHEALTHy
Joined: 02 Feb 2004 Posts: 4580
You Are Not Nuts!!!!!!!!!!!!!!! Posted: 11-30-04 17:20pm
And you are not alone! I totally agree
with mia, and if the dr's. Do ever get
you diagnosed then most of the dr's. Will
prescribe a bunch of meds and to me that
is not always the best thing, the best
thing that I have learned from all of this
is to keep yourself going and try your
best to avoid too much stress(i know,
easier said than done), and like mia said,
sleep and rest is good, but try not to
dwell on any of this, it just makes
matters worse.
There is a gentleman by the name of Dr.
Venugopal, I know he is listed in the back
pain forum, you might want to p.M. Him,
he is a naturopathic, herbal med Dr., he
might suggest something to help you.
Try not to make to many lifetime plans,
too much happens, I have learned this from
experience.
The very best to you!
Sincerely,
sandy
well, my marriage isn't all that unhappy
and i've dealt with worse problems in my
life without suffering from excrutiating
joint pain as a result -- so I say that's
a bunch of bull-hockey! 
