Is the Mayo Clinic the place to go for diagnosis?

[lquidstarzzz]

My sister was diagnosed with MS (finally) after going to the Mayo Clinic. She had been trying for 2-3 years to find out what was wrong. Her doctors in Kansas were perplexed. She feels like they were not sympathetic to her pains, treating her like she was making it up.

She said the doctors at Mayo Clinic are proud to the point of being pompous-but they know their stuff, so they have the right to be that way.

She thinks I have MS from my symptoms, because my symptoms are so similar to hers.

I have been to many doctors with no relief from my symptoms of pain and numbness.
A GP, Internist,Rheumatologist,heart specialists, eye doctors,and a foot doctor.

The Rheumatologist called my symptoms an "Atypical Connective Tisue Disorder". But the treatments and drugs he prescribed have not taken away the numbness and pain.

I am weary of this search for relief...is the Mayo Clinic the place to go????

[julia111]

Hi!  Mayo Clinic, Jacksonville pretty much told me the same thing, "Come back when you get worse."

I was diagnosed 12 years ago at the same clinic with Fibromyalgia and possible mild lupus.

Earlier this year I went with a long list of NEW complaints and timeline - debilitating fatigue;  pain; muscle weakness;  dizziness;  foot, leg, hand and facial numbness;  buzzing down legs;  strange sensation of water going down leg;  muscle spasms; occasional blurred vision; problems associated w/ speech (slurred speech, difficulty recalling words, substituting wrong words); inability to complete tasks at home and work;  dropping things;  twitching, uncontrolled jerking movements; undiagnosed facial pain, undiagnosed pain in upper abdomen -

I saw a Reumatologist and Neurologist - and brought with me my "normal" MRI - WITHOUT contrast on Open MRI machine .  .  .  

I was sure they would do a lot of further testing - but only a few blood tests were run, mostly to rule out Lupus.  

I was rediagnosed with Fibromyalgia and was told that a neurological disease could not be diagnosed at this time.  

I was given the option to try several medications to treat the symptoms including:  Amitriptyline, Lyrica,  Provigil, Neurontin and Baclofen.

Basically, I was told to come back for further testing if my symptoms were to become more "objective" -

I hope this helps ---- Julia

[lquidstarzzz]

Thanks everyone for your imput. I appreciate any and all opinions.

I am glad this place is here- learning about MS will help me with my sister too.

I hope and I pray for everyone that they get some relief and some answers for their illnesses and symptoms.

I just want to know the reason for my pain- then I will do what ever it takes to take care of it.

I will do some more research on Universities in my area . Thanks again-

Bee

[monotreme]

I agree that there are lots of opinions on Mayo good and bad.  My husband went to the Mayo in Rochester Minnesota and it was a giant waste of time and money.  

The doctors acknowledged that he was developing a neurological disease but would not intervene and said to "come back when you get worse".  No thanks.  They are a bunch of arrogant pompous over rated specialists.  

Is there any university medical school hospital near you in another state??  They would be just as good in my opinion.

Elaine

[sunflwrgrdn]

I agree with wanna about 100 different answers, heres my Mayo story... I have been trying to get answers to my symptoms and LP results for 9 years, I finally get enough money to go to the Mayo (My out-of-network insurance sucks) and hoping they will have all the answers I have been seeking, I was wrong they couldn't answer my questions any better than the docs in KC, I spent a little less than $10,000 out of pocket for nothing. But I hope that if you go you have better luck, it is quite a clinic, very organized and scheduled.

[Want to feel well!!!]

Sorry you are weary!  It's not easy knowing you don't feel well and searching for an answer.

As far as the Mayo Clinic, you could probably ask 100 different people and get 100 different answers.  The same would probably hold true of Johns Hopkins, Cleveland Clinic, Yale...opinions on both ends of the spectrum...but it would be better to go and try rather than not.  You said they did helped your sister, right?  

Sorry this has brought you here, but this is a good place to get some help and direction.

Best wishes...
Wanna