My Ticket out of Limboland

I hope this post will help give some of you some hope.  I have been hanging out here in Limboland for quite some time, determined to find an answer, and I hope this might help some of you to keep looking for that answer.

Last summer was my first visit to a neurologist and after several months he determined my symptoms were not caused by anything neurologic, and MS was ruled out.  He was very helpful to me, solved several issues in my back and neck, but my fatigue and vertigo were still unresolved.  He sent me to a rheumatologist.

While under the care of the rheumy, he in turn sent me to an ID specialist, who then sent me to an ENT.  It was frustrating to be bouncing around like this, but each specialist would suggest things that might be helpful.

After two months, the rheumy had run several blood tests, but he was stumped so he referred me to the Cleveland Clinic to see a doctor who specialized in immunology/rheumatology and is involved in research related to specific autoimmune diseases.

All of this is happening quite fast for me.  I saw the CC doc this week, he does not have a specific answer and is running more tests, however if the tests do not help him determine a specific autoimmune disease he will start to treatment anyway.  TREATMENT!!!  That’s the word I have been looking for.

One thing I discussed with the CC doc was the reporting of symptoms; all the “little” things.  I asked him at what point do you stop taking note of all these occurrences.  He said all these little things alone mean nothing, but once you start to put the puzzle together all these little pieces ARE important.  When dealing with autoimmune diseases the medical community is very much in the dark, and it is only by attempting to use all these little pieces that an entire picture can form.  I really liked his take on this.  Nothing I said to him was taken lightly…not once did I hear, “That doesn’t mean anything.”

That said, as patients we also need to be careful what we see as a “symptom.”  It would seem reasonable, that if something, even something small, if it is recurring and it is troublesome, take note.  The doc gave me an example of a red ear.  Alone a red ear is not particularly telling, but in combination with other symptoms it is a very important piece of the puzzle for a certain disease.

Just as an example of his thoroughness, he is the first doctor to ever thoroughly discuss my eyes and he said I needed to see an ophthalmologist and he gave me a specific disease he wants the ophthalmologist to check for.  

Over the past year my blood tests results seem to be the best compass the rheumatologist used.  I have high EbV and high CMV antibodies, my ANA was normal a year ago and now it is high…those results along with and my symptoms are what has taken me to this point.  I think many of us here have been looking into different autoimmune diseases and it might very well be that is were many of our answers are.

Everyone who is looking for answers, keep trying.  You know yourself and you know how you should be feeling.  

Wanna

[dannig]

What type of Tx is the doc going to start?
Danni

[Want to feel well!!!]

First steroids, then adding an immunosuppressant.

Wanna

[monotreme]

What disease is he diagnosing?  This is very interesting.  A doctor at CC who actually cares!

Elaine

[grannyhotwheels]

How can they began a treatment if they don't know what they are treating?  It definitely sounds like you are going in the right direction but that is something a would be asking about.  

One of the first neurologist that I went to, back in 2004, told my husband that he didn't know what was wrong with me but he said that I would only get worse and never better.  How would he know that if he didn't know what was wrong with me? hmmm  Sometimes I wonder about these doctors of ours.

I'll be praying,
Carol

[Want to feel well!!!]

My experience with the CC has been very positive.  I feel I am going in the right direction.

Wanna

[wingnut19]

Hey Honey Bunches!

I, for one, am very happy for you!!  HUGS!!

This gives me great hope!  Thank you so much for sharing your story!!  It's wonderful to know that just because I (we) encounter unprofessional, non-thorough, idiot doctors, there is still HOPE out there to find answers!!

Thanks, Wanna!
Love
Tammy  :)

[Rena705]

It sounds as though you had a very positive meeting with this doctor and at least you are not being shooed out of his office with no answers...I for one will be very interested in what this dr. is going treat you with and why.  Good luck honey!

Rena

[Want to feel well!!!]

Yes, this was very positive.  I have never spent that amount of time with one doctor at one sitting!  There are doctors out there who do care and who do listen.

Wanna

[Quixotic1]

I am so happy for you!  It has been clear for some time now that your immune system is failing to handle the viruses (EBV and CMV) correctly.  It is in overdrive and making inappropriate antibodies by the wartload!  The main thing I was hoping you would get out of all of this was a referral to an academic Immunologist.  These are the guys that can examine the different aspects of the immune system (like the differenct kinds of T-cells, and colonies of B-cells) and see what is out of whack.  The rheumatologist probably ruled out the main known autoimmune diseases, because Rheumatology and Immunology study the same things.  But, the Rheumatologists are more clinical and deal with the day-to-day diseases.  The Immunologist are typically a little more research oriented and they are the ones who discover and characterize new, autoimmune diseases, and figure out in more detail how the immune system works.

Your clues were truly in your abnormal responses to the viruses.  I had always focused on the link between EBV and MS (as the people who tended to have higher titers of EBV), but that is because that is all I knew about.  You are in the hands of someone who knows a lot more.  That is wonderful.

And it sounds like this guy is not going to require that you meet the parameters of some already described disease!  He recognizes that your immune system is wonky big-time and that it needs to be tamped down.  The fatigue, especially, is characteristic of an autoimmune disorder.

I am soooooo happy for you!

Quix

[Want to feel well!!!]

Thanks Quix!  I really feel that this the end of the search for me.

You were so right about the differences between Rheumatology and Immunology.

He did say, even if he put a specific name on it, the treatment would be basically the same.  He said there are about 400 different diseases this could be.  

He does research and he is interested in having a clearer understanding of autoimmune diseases...he said the medical community is in the dark in this area.

This doctor was trying to make a connection to perhaps a virus that maybe kicked this off 9 years ago when the fatigue started...the day I ran and felt awful...and I feel this all started then.  HE thought that was significant!

Thanks for your input and support!!!

Wanna  :o)

[Pamela562]

I'm truly happy for you.  I feel that your search ended when you arrived at CC. I myself went there and it was an informative visit.  Good luck to you.

[sllowe]

WOOOO HOOO!

Someone who is thorough, confident, caring and willing to TREAT!

I'm so happy for you Wanna.  It sure has been a long road.  This thread has so much good information for everyone to keep in mind.  

I pray treatment serves you well, this is great news.

-SL

[luverofrogs]

yea!!!!!  I hope that this is the end of your journey for answers and that the treatment helps you reclaim your life:o).

[Want to feel well!!!]

Thanks guys!  I really don't know how I would have made it through this past year had it not been for this little corner of the world.

There is so much information available here, in each individual story.  My heart goes out to everyone and I know somewhere each of us can find the right answer given the right set of circumstances.

((((Group HUG))))
Wanna