Grrr... now I have to find another neuro!

[jensequitur]

Just got a letter in the mail today that said that my neuro at UTSW is leaving.  Now what?  It took a year for me to find this one.  I guess either I'll check to see if any other neuro in that department is taking patients, or go back to a regular neuro (shudder.)  

What I really need is a neurologist that will talk to me about an oral DMD.  Right now I'm on Betaseron, and the only benefit to Betaseron is the reduction in relapses.  My relapses are already at none - I'm just steadily progressing.

[Deb61]

I'm seeing Dr. Graves, a new neurologist at UTSW.  She's great.  Did you get an appointment with someone yet?

[jensequitur]

Don't get me wrong, Dr. Courtney is great - the reason I'm thinking about the oral is that we had already discussed switching to the oral.  Now I'll have to have that conversation with the new one.  I have a hard time taking the injectables - I think my brain must deliberately forget to take it because I hate it so much.

[sllowe]

I hope the new one is fab Jensy! Maybe will be a fresh look at you and your MS w/different eyes :)

[HVAC]

You are lucky. Here we have so few MS Specialist that it is like musical chairs when one leaves to get on with another because thousands of patients are trying to get on with the other Doctors. It can take up to a year to get an appointment. The clinics try to get replacement MS Specialists but it is not easy. Young Doctors are just not interested in MS as a Specialty, long hours and less money. UNC has a scholarship for a a medical student who will go into MS. In 9 years it has had no takers. UNC has had only one MS Specialist for the whole hospital for years and she does research and seldom sees patients. Duke has 2 MS Specialists who see patients. We have one Doctor way past retirement age who has not retired because he can't find a replacement and does not want to leave a gap. Here with 5 Specialists Covering half the state of NC we are just happy to see a specialist at all. I asked my Doctor at Duke why there was no MS Clinic in the area. He said because hospitals lose money on MS. Duke thought about having a MS Clinic.

Alex

[jensequitur]

MyChart is great - whenever I see a doctor within that system, they can bring up the records on me and see it all right there.  I still have to repeat my oral history when I see a new doc, for some reason.

[maxthecat43]

Sorry, I really should have read through all the other replies before I posted mine.  

Tammy

[maxthecat43]

I'm sorry to hear about this.  Finding a neuro you trust is a difficult thing to do.  Hopefully, your doctor is making referrals himself.  I guess I'd start there, and see if you feel comfortable after meeting with him.  It's just another stressor...

Tammy

[Lulu54]

I am glad you can tuck that worry aside, there' s enough to be concerned about these days.

My docs at several different places are  also using MyChart and one of these days we should write about it ....

[jensequitur]

I guess I'll stop panicking!

I stay hooked up with a system known as 'Mychart' that keeps track of my medical records, tests, and appointments.  It's actually pretty handy, especially when I want to e-mail the doc!  

I e-mailed them and got this in response - "We have 4 other physicians in our practice and 4 physician extenders including myself. If you would like to remain a patient at the MS clinic, I will be seeing you at your next appointment instead of Dr. Courtney. We will be hiring a new physician to replace Dr. Courtney and my hope is your next follow up after our appointment with be with new doctor."

[jenphilly]

Ask your neuro for a referral...

If you are serious about an oral DMD, try contacting the pharma company direct for what doctors have been involved in their trials....   If you sign up for gilenya website, you will get a mailer almost weekly for local seminars that have usually a couple doctors involved with gilenya in to present / talk.  I considered gilenya early on and still get mailers from them.  They have a link for connecting with people near you that are on gilenya, someone thru that connection might be able to give you info on a neuro that will work for you!

Where there is a will...  :)

Good luck!

Jen