Have you been to a MS Clnic?

[Ndobbins]

Just curious as to who has been. Do you have to be referred by a neuro & what happened tests were done there?

Any experiences you have had with this will be apprwciated.

Thanks,
Nancy

[marymoto]

hi i go to ubc m.s. clinic i was refered there by my family physician. i also saw a neuroligist who examined me and i told him my story he said i needed to keep on going to the ms. clinic. i am diagnosed

[Ndobbins]

You are fortunate to have found a good doctor & that your insurance is agreeable to you choosing where you want to go without a referral. I believe my insurance will allow me to also but I need to check first.

Take care!
Nancy

[lovemy6monkeys]

I saw an MS clinic (probably the same one that Wiggles saw) and was not impressed. I saw a resident, who was very nice and polite and did some regular neurological exam stuff. She then went and talked with the head doctor, who came in and did a couple tests and they both left. The resident came back in and very politely implied that maybe it is all anxiety and come back in 6 months. Or if I go blind or become paralyzed they will see me sooner.

My neuro is not in an MS center, but he is very knowledgeable about MS (his wife has it and a good majority of his patients are MS patients). I'm very happy with him.

I think, in the end, it might be less a matter of MS center or not, and more a matter of the doctor. And, how comfortable you are with that doctor.

Good luck!
~Jess

[Ndobbins]

I found one at UAMS which is supposed to be a good hospital.

Thanks again!
Nancy

[Ndobbins]

Thanks Lulu,

I guess I looked in the wrong place online.

Might be the nature of the illness but I am feeling good right now & wondering if I have a problem. Then when a bad episode hits, I strongly suspect that I do have MS.

Take care,
Nancy

[starryeyes1]

I go to the MS Center in Kirkland Washington. I didn't need a referral because my insurance lets me pick my doctor without insurance. That is where I went and finally got my diagnosis. My Dr is soo nice and compassionate. Quite a change from my previous neurologists.

Kristi

[Lulu54]

There is an MS clinic at Vanderbilt University as well as UT over in Knoxville.  

There are also a few MS clinics listed for Arkansas.  You can find them if you google "ms clinic in arkansas."

I know what you mean about the mounting bills - good luck with the next step.

Lulu

[Ndobbins]

Thanks so much to everyone for your comments. I am not sure what to do next. Bills mount up with each test even with insurance & deductibles met!

I live about 1.5 hours from Memphis & the closest MS Clinic is Birmingham or Dallas. Both being 4 to 5 hours away.

I go back to the neuro in Dec & am not sure where we will go then.

Take care,
Nancy

[wiggles94]

Hi Nancy,
I went to an MS center affiliated with a teaching hospital in Rochester NY.

My original neuro referred me  at my request , and they needed all my paper work before  I could be seen.  They wouldn't schedule me with the Dr I was referred to, but had me see a new doc at the clinic who is also an MS specialist.  That is because they are building his caseload, and I got in quicker.

I have seen the doc twice and each time he has spent several hours with me going over MRI's, examining me, discussing my situation - I am in a gray area - possible MS.  He is now scheduling me for an MRA to check arteries based on some concerns.

He had me do some evoked potentials I hadn't had yet, and did a mini mental status test with me.  He has suggested redoing LP but I'm not wanting to do that again at this time.
He is working very hard trying to help me make sure I don't have something else that we need to treat, and in the meantime is letting me choose if I want to stay on REBIF.  (I am for now).  He is also going to schedule me for a repeat MRI on a 3T machine (I had it done on 1.5 before) 6 months from my last MRI.  WE don't have 3T machines in my town.

The clinic is in the neurology department of the hospital, and the docs only see patients on certain days.  When not seeing patients, they are doing research and teaching.

The referrals for testing, and getting approval for meds from my insurance company takes longer than it did through my other neuro's office.   They are very good though about letting me do testing in my town (I live 1 1/2 hours away from the clinic).  

This doc gave me his e mail address and when I had a question,  he answered me within a few hours.  

I feel the MS clinic is a good place for me to be going right now - even though it's a 1 1/2 drive.  

Good luck to you.

[essdipity]

At Hopkins, 'MS Clinic' is more of a logical than a physical construct. There is no separate location---all patients are seen in the outpatient neurology department.

The MS neuros (and others, I'm sure) spend the big majority of their time doing research and carrying out their other faculty duties, so the time they have seeing patients is limited, maybe one day per week. When they are seeing patients, they are 'in the MS clinic,' the same location where other patients are being tested or treated for other neuro issues. I believe there are about 10 MS specialists.

Some MS centers are not primarily research-oriented or part of a university. I would think it might be easier to get appts. there, since their doctors have more patient time.

ess

[RedFlame]

Yes, I have been seen at the MS Clinic and University of Michigan Ann Arbor two times.  A referral was necessary and they wouldn't make an appointment until they had received all the paperwork, tests etc.  

I'm not sure how MS Clinics are run.  My 'clinic' is in the 'adult medicine' and 'pediatric medicine' clinics.  There were about 20 patients in the waiting room and I was the only one with MS.  

I had assummed that an MS Clinic would be in a separate office so I don't know how typical this was.  Both times my name was called the nurse asked me to hurry-----I was walking very slowly with a walker.  

They ordered every test I had ever had including another lumbar puncture even though the tests had been done just a few months prior.  The only tests that were added was the evoked potentials.

I think you are doing the right thing by asking about the experience of others.  

I hope you will get the referral you need soon

Red

[michelleric]

I also have a MS neuro @ the Mellon Center @ the Cleveland Clinic. My Ophthalmologist referred me there, and I do think they need a referral from a Doc.

They do all the testing there and prefer their own tests.  (I do think that is $ related, just my opinion though.)

I would highly recommend a MS neuro, as that is what their specialty is.

Michelle

[essdipity]

Yes, I am being treated at the Hopkins MS clinic. To get there, I asked for a referral from my previous neuro, because I had learned that at that time, Hopkins was the only local place with outpatient 3T MRI. Actually, that was a good move, because by referencing the equipment, I kept the discussion away from the personal.

I'm not sure if Hopkins does require a referral, but I think so. They do require that all previous reports, test findings, etc., be sent before any appointment can be made, so it was a several-months process. Once there, I received a very thorough neuro exam, and even more tests were ordered. Oddly, no MRI until considerably later, but I was started on a DMD quite promptly.

For Nancy or anyone else in North America thinking of going to an MS clinic, I suggest you check the Consortium of MS Centers website (mscare.org) to find one. Then go to that place's own site. They are bound to list their requirements for being seen there.

It is always better to be seen by an MS specialist if at all possible. Many neuros may say they have this specialty, but the ones at MS clinics certainly do.

ess