Undiagnosed and Frustrated

[Brando]

8/00

[Empreinte]

November 26, 2003

Hi Brando ~
Thanks for writing back and yes you are right.  
It seems that no matter where you go the same things are
said, again, and again.
I heard the same thing - as ended up at Baylor Medical
in Dallas and the first thing they said on my first vist was
I doubt we will find anyting - when clearly, at that time
I was dying.  Literally.  
I am female also and in my city I spent 5 weeks in a hospital
with no diagnosis.  They flew me out of town to Baylor which
at that time I believe they saved my life.  I spent 2 full weeks there in the hospital and it did make a difference  I was sent to them
with 23 medications taken every day.  So unnecessary - but
I was extremely ill and they could not figure me out.  
It was right in front of their eyes.  
They helped me withdraw from all meds and then told me to come
back in 9 months or less if symptoms continued.  
Well, they returned.  And I was diagnosed with Severe Crohn's
Disease with associated arthritis.  I was so swollen up.
I could not eat or drink.  Not even water without losing it.
I lost over 100 pounds and here in my town they wanted to
give me the 'last rites', so to speak, I am not Catholic.
Once I was properly diagnosed, I received the right medications
and went on to continue, of course, to deal with this, as there
is no cure, but did emmensely better.  Especially, the ilemination of 23 medications!  They were appalled at the
treatment process here in my town.  So was I and my family!
Hang In There, don't give up and keep fighting.  I did.  And
so far, after 17 years, I am still here.
At the present, and after all these years of damage of Crohn's and prednisone use they want me to go to The Mayo for help.  Not
sure yet about either place.  Just need time to think, I guess.
E me back if you care to talk - willing to correspond.  I am
leary of any hospittal!
E

[CCF-Neuro-M.D.-CS]

Your case is very complex, and without being able to evaluate you or review the specifics of your testing I can not provide accuratet advise. The normal EMG at Mayo helps to exclude major muslce/nerve dysfunction. If you have not had a formal evaluation of why your B12 is low, it may be reasonable. There are various reasons for low B12 levels, and one of them involves the body producing an anti-body which destroys the cell sin the stomach needed for B12 absorption. If you have this antibody then you may be more likely to have other autoimmune disorders.

Other things which I am sure have probably been checked include connective tissue and inflammatory disorders such as lupus.

I wish I could provide more insight, good luck.

[Empreinte]

Hi Brando,
I read your post and I am so sorry that you have had to go
through all of this.  Sincerely.
I am not in this category but was surfing and I hope you don't
mind that I read your post but I do have a question for you -
if you please, and I emphasize please, could you tell me which
Mayo Clinic you went to?  Were they helpful or at least try
to help you?  
My post is under Gastro - I am Empreinte.  I have had many
Doctor's tell me that is where I need to be, but none of them
will tell which one to go to and I am scared out of my wits of going anywhere - at present not able to leave my home, anyway.
Not to mention the disruption in mine and my Husband's life, job, etc....  I need help in the worse way and
so if you don't mind, could you tell me your experience with
the Mayo?
The things us humans sometimes have to endure, eh?  You really
strike me as handling your situation bravely and with courage.
Good for you, Brando.  I am trying to but I am having such
a difficult time, at this stage, of - how can I say -
biting the bullet type of thing.  I am a strong woman and was
raised to be so.  Life can hand all of us some raw deals, at
times - oh, and this can include Doctor's, as well.  Sometimes
I think THEY think that they are above it all!  At least that
is how some of them have come across with me.  Don't need that -
not when I, a human being, am in dire agony.
God, how I wish some of them would read these posts.  
I wish you the best and for every post that I do read - I pray,
sincerely, to GOD, to help each and everyone of us - no
matter what the problem is.  I guess I have learned that we
all, at one time or another, will have our own cross to bear.
How are you now?  What do the Doc's say about your condition now?  What is your age?  I am 46 - so have been around for awhile (ha ha) and with every fiber of my being - intend to keep hanging in there.  You, too, ok?  
If you care to, and I hope you do, please post me.  Either here
or over on the Gastro site.  It would be greatly appreciated and a tremendous help.
Thanks again and I hope I hear back from you.
Sincerely,
Empreinte

[Brando]

1st for your reference: I'm 33 & female.Neuro probs started 3 yrs ago with 3 flareups and subsequent remissions. Last Jan, went to Mayo in Rochstr MN as I understand their neuro dept to be among the best.The DR I saw predicted that all my symptoms would "not amount to much," but since I was there he ran me thru testing (blood, urine, nerve conduct, EMG, autosensory, xray, neuro exam).All tested normal w/ exception of high heart rate & increased BP during auto test which DR & I both attribute to anxiety & some chaotic events during the test caused by the 2 techs(they accidently blew something up in a microwave & almost knocked over a monitor, & complained about their supervisor, all during my test!) Not sure why they did NOT do another MRI(hadn't had 1 in 3 yrs) nor lumbar punct. DR gave no real diagnosis & said not to worry. Again, at the time, my sx were mostly nerve pain, trembling, fasics, anxiety.I went away feeling more confident, but when I recvd his followup letter in the mail, I noticed that one of the sx I had described to him, he had recorded inaccurately. So even at Mayo, no one is perfect. It did make me question his dx (or lack thereof). However, I had started a new flareup in the sprg w/ weird surging blood pressure after standing a minute, a drooping eyelid for 8 wks, more dizziness (could be anxiety), occsnl stabbing pain. Concerns: ms, neurosarc, unknown.
Good luck and prayers to you as well.

[Empreinte]

Brando,
I forgot to mention - that I have been told by several Doctor's
in my area so many different diagnosis'.
One of the latest was MS.
I haven't a clue as what that really is or if what I was
just recently told, in the Gastro area, and diagnosed with, is true or not.  
I am suffering with many different types of symptoms and my
balance is one of them.  I just recently started with tremors, chills, and shaking so badly that my teeth chatter, at times.  I
personally don't know if it is the steroids causing this, pain,
or a more serious illness and am being misdiagnosed, once again.
Sincerely,
Empreinte