mayo or cleveland clinic

[skarey]

Hey guys,
   I am considering going to the mayo or cleveland clinic to get a good through evaulation and see if hopefully they can help me.  
   I'm still feeling like ****.  This "flare" has been going on for 3 months now and I'm sick of not having answers.  So far everything has been pretty much normal.  They say I don't have MS, but then what do I have?  I'm currently being evaulated for Lyme.  Waiting for my Igenex results.  However if it isn't lyme then I'm really at a loss?  The only other thing that has come back abnomal is H EBV titers.  However I don't feel my symptoms are much of that besides the fatigue, and occasional painful lymph in armpits and groin).
  So I guess my question is is How do I get an appt with Mayo or Cleveland?  Can I make the appt myself or do I need a referral?  How do I know which department I need to be seen in?  Cause I don't really know where my symptoms fit... Neurology, ID, etc???
   Thanks for your help.
  

[goofysmom1]

I went to the Mayo Clinic in AZ in January - hoping to find some answers.  I will say that it is a very well run facility - but don't pin your hopes on a big "well known" facility to solve everything for you.

The neurologist that I saw at the Mayo clinic didn't want to see my timeline or my list of symptoms - although at the end of my initial appointment, he did take my list of symptoms to include in my chart.  He was nice, but I left the appointment feeling like my explanation of my symptoms was very muddled - he didn't spend a lot of time clarifying things.  Thinking back - there were things that we didn't discuss and should have...

He ordered the "typical" tests.  He said wanted to rule out MS.  After all of my tests came back "normal" or "unremarkable", other than a severe Vitamin D deficiency - he told me that I might be "too aware of my symptoms" and that "although he thought there was something going on, until a test shows something there isn't anything else to do".

After spending a lot of money to get there and stay for almost 2 weeks, to walk away with no direction or any answers I felt very defeated.  I began to doubt myself.  

My husband turned me around with this statement: "just because you went to the Mayo clinic, doesn't mean that you saw the right doctor or the best doctor".  

So I decided to continue my search for a doctor that would listen to me and help me.  I have just begun to see an Internist here in Seattle, and she is wonderful.  Of the many doctors I have seen, she is the FIRST doctor to address the numbness/tingling/burning sensations I experience and I have just started taking Neurontin.  She also believes that with the symptoms that I experience, I should be seen and monitored by a neurologist that specializes in MS - I am waiting for the referral as we speak.

So, I guess in summary, unless you know a doctor (or know someone who can refer you to a specific neuro)  at one of the "well known facilities" I would suggest a lot of research and look into finding specialists in your area first.

My two cents, for what it is worth.

Good luck,
Chrisy

[kwarendorf]

Hi NSH - The post to which you responded is nearly 4 years old. Many of the participants in this thread may no longer be around. Just didn;t want you to think you were being ignored :-)

Kyle

[NeedSomeHelp123]

I can relate to your issues and I am scheduled to go to Cleveland Clinic in 3 weeks.  How are you now?  Did you get any answers?  Please update.  Thank you.

[ashleyPT]

When I went to Cleveland I requested my appointment online then someone contacted me from the neurology department.  She was then really helpful with figuring out which specialist to see after I explained my symptoms.  We don't have any complaints with my care at Cleveland Clinic.