Should I go to the Mellen Center at the Cleveland Clinic?

[cch127]

I was just diagnosed in August 2013 and go to a general neurologist. He started me right away on Avonex and I am doing okay. Still have numb toes and fingers but can live with it.

I live about 2 hours away from the Cleveland Clinic so I am wondering should I go and see what they say? How do people know if their doctor is helping them make the right meds decision? Should I be doing other things or taking different drugs or whatever that Cleveland Clinic may know about being a MS specialty place? Would Cleveland Clinic be a better choice?

I know exactly zero people with MS so I am kinda just on my own with this.

Thank you for any help...

[MSer102]

Good question! A couple of other people have recently asked the same thing. I'll give you the same answer:

The Cleveland Clinic is known world wide for medical excellence. I think you can't go wrong by being evaluated there. That doesn't mean you'll necessarily like or agree with everything you hear. But they are experts at the Mellon Center, and their knowledge and reputation are rock solid.

[JerryD]

I agree with MSer 102. Good advice. If you can get to the Mellen Center, you should go there. Good luck

[cch127]

Can you explain what you mean by I may not like what they say or I may not agree with the Cleveland clinic?

[MSer102]

Can you explain what you mean by I may not like what they say or I may not agree with the Cleveland clinic?

For example, if someone believes they have MS but the doctors tell them that they don't meet the diagnostic criteria, they might not be very happy to hear something they didn't expect and think the doctors aren't qualified and don't know what they're talking about.

If someone comes in with a previous diagnosis of MS they might not be very happy to hear that they don't meet the diagnostic criteria and the doctors don't confirm the diagnosis. They sometimes think it's because the doctors aren't qualified and don't know what they're talking about.

Or if someone comes in with their heart set on taking a particular medicine they might not be very happy to hear that that aren't a good medical candidate for the medicine and the doctors won't prescribe it for them.

So if it should be that something happens that you don't expect, it isn't because the doctors there aren't qualified and don't know what they're talking about. They have the medical expertise to back up whatever it is they find, so you'll know that you got an expert opinion.

[cch127]

Thank you for the thoughtful reply... I am just trying to figure out what is best.

[javaaddict]

Mellen

I really liked the Mellen center. I am also 2 hours away, I also know nobody else with MS, and I just had my initial appointment a few weeks ago. It was a great experience.

I am terminating my current provider locally (he had a lot of issues which I think ultimately boiled down to him not being a specialist and me being early in the disease process) and will continue my care there for a while.

[kelm10]

just like any other place

My local nuero sent me to Cleveland Clinic, Mellen Center, as a second opinion. I did not ask.

Is your local neuro, listed as a MS specialist with the NMSS. If they see more then MS patients, that list use to give the percentage of patients that have MS.

Just like any other place or with certain patients, I had one wonderful experience at Cleveland clinic. I had one not very good experience with another clincian there. I gave that physcian another chance and it did not go well. Is she an awful nuero, no. I have high expectations. I am a nurse, I want things done right.

I still think that it is a good idea, if you have the oportunity.

[MSMOBILITYMAN]

THEY CAN MAKE MISTAKES TOO...

THE CLEVELAND CLINIC DX'ED ME SOME 10 YEARS AGO...
SINCE THEN I'VE SEEN OTHER NEURO'S THAT SAID ,,,NO YOU HAVE DIABETIC NEUROPATHY..OR ANOTHER SAID...NO NOT MS...TM TRANSVERSE MYLITIS,,,,SO WHO IS RIGHT??? I MAY HAVE ALL THREE DISEASES??L

[onlyairfare]

Even within the "MS Specialty" clinics and doctors, there are still differences of opinion, and in personality. So it is not always easy to find the right doctor for you.

Some doctors/clinics are very aggressive and want to start medications right away, while others are more inclined to take a "wait and see what happens" approach.

Early on I had more MS problems and I also had a brain tumor that required surgery, so back then I wanted all the super-specialists I could find. Now that I am "healthy" and stable, I am happy with one neuro in a private office; though he is an MS specialist, he is also willing to monitor my brain tumor and seizure medications.

You can't go wrong with Mellen Clinic, as they have an excellent reputation. After you have been seen there, you can decide for yourself if it is worth the trip, or if things will be fine with your home town neuro.

[GracieBH]

I went to the Mellen Center about 8 years ago. All my tests were done prior to going there so I went there, I guess find out more about MS.

My only issue after the first doctor, a second doctor came in who I didn't even talk to was pushing one certain drug on me. She wouldn't even listen to my questions. I got the feeling maybe there was a deal as some doctors have with drug companies. All she did was talk about the one DMD and it was end of discussion. That was a red flag with me. I found out no more that what my regular neuro said to me and still am treated by him.

There is another center Oak Tree I believe it is located around Akron if you want a specialty clinic. I have never been there so I can't tell you anything about them.

Hope you find someone that can help you. Take Care.