No, l haven’t traded Glenn in, but I DO have a new neurologist, and he’s a gem! You have to be a neurology patient to understand the pure unbridled delight I feel in finally finding a NEURO that understands all the quirks and aches that come in the package labeled Multiple Sclerosis. We are definitely on the same wavelength.
When we first knew we were moving to California, I knew I had to find a neurologist that was still running the tail end of the FTY320 trial. This medication was the FIRST ORAL medication to be used with MS, and it was working well for me. I was one of the few originals trailing this drug, so it seemed to be just as important to the drug company to keep tabs on me. So, with the help of my then neurologist at the University of Western Ontario Medical Center, I was advised of the University of California San Francisco (UCSF), where Dr Douglas Goodin was running this trial. So I should just give him a buzz and pick up where I left off in Canada, right?
Wrong! Getting through his multilayered staff to actually get an appointment brought only ‘no, you need a referral from your family doctor, and then we’ll contact you…..’. I tried explaining what the reason for my contact was, but NO. Fortunately through my contacts in my MS support group in Santa Clara I was able to find out that Dr Goodin was to be ‘hosting a dinner’ at a local restaurant. This is funded by drug companies to get neurologists to consider their product over one of the increasing number of competitor’s products. These meals are FREE for MS patients to attend, to hear about all the advantages of the drug of the moment. So, since the front door was locked, my only option was to sneak in the back door!
I’m not sure which drug was being touted that evening, but I had a beautiful letter composed to the good doctor. During a momentary break in the meal, I got up and strode to the head table, introduced myself, and handed my letter to the doctor. He smiled, and said, “Sure, I’ll take you on as a patient,”, and just like that, I had straddled UCSF’s beaurocracy, and was easily able to make an official appointment to see Dr Goodin.
When the trial officially ended two months ago, I had a farewell appointment with UCSF. Since the trip to this facility took over an hour, and required Glenn to take me to these appointments, I was anxious to transfer to a closer facility. A referral to Stanford University’s new Neurosciences program was easily attained. An appointment was equally easy to make, since THEY contacted ME upon receipt of the referral from UCSF. Within a month, I was heading to Stanford, to see Dr Jeffrey Dunn.
So there you have it: Dr Dunn is my new neuro bestie. He is an soft spoken gentleman who has worked wonders in creating this new state-of-the art neurological science center at this iconic institution. And what an amazingly different feel this whole institution gives to a nervous patient. Just walking in to the registration area is like a warm group hug, so gently welcoming everyone is! First, you are sent for a blood draw, then you are escorted to a warm sunny waiting area. You pause there for a moment, then someone is wanting to take you to the medical reception area. From there, a resident escorts you to an exam room, and proceeds to give you the most exacting EDSS you’ve ever had. To be truthful, it was also a bit brutal, as the poor frustrated fellow ‘taps’ repeatedly on your limbs, trying to elicit a response that isn’t easily obtained. That in itself provides information!
Shortly after this arduous experience, the resident escorts Dr Dunn in to my cubicle. He has obviously quickly briefed him, as to the findings from my EDSS, as well as a scan of the MRI I brought from UCSF. To the credit of the resident, he took the time to explain all the shadows and artifacts on my MRI to me. I’ve never had that done before, so I was very pleased to have gleaned that bit of information! But Dr Dunn was clearly not impressed with this clearly inferior scan.
“We need to get a better look at your neurological self, so I’m going to order a different kind of an MRI: this one will be a 3 Tesla, which will provide MUCH better detail of the areas of concern on your last MRI. We will also do your thoracic spinal cord as well as your brain.”
This delighted me, since I have long thought that my active lesions were on my spinal cord. This tidbit of knowledge comes from my internet snooping about all things MS. When you are the fifth member of your immediate family to be diagnosed with a malady, it becomes very personal!
My MRI is scheduled for next week, which is a WOW in itself for a transplanted Canadian! I am also being referred to a Neuro Opthamologist, since the good doctors saw a bit of macular edema when they were peering into my eyes. Gilenya is known to cause this problem, so best we get on it right away! I haven’t heard from that doctor yet, but apparently they’ll be in touch.
Moving to the Stanford Neurosciences umbrella feels like being able to delegate all of my stressing about finding the right person to address every little problem that might come up. They encompass such a wide variety of potential needs for neuro patients that one can’t help but feeling well cared for! I am excited to go forward with this group, knowing that I am indeed receiving the best care possible.