Recently diagnosed with GBS. I am rural bound.
August 6, 2018 at 12:32 pm
I am 78 years old. Some say challenging in itself. I live 7 hours round trip down the mountain to Scottsdale AZ. We have a Mayo owned regional medical center with no Neurologist on staff. After weeks of “autoimmune” flare-ups they sent me to a gerontologist and he farmed me off to his NP. They confirmed Auto Immune. Armed with low dose Gabba, 10 day supply of Baclofen for spasms and 10 days of pain medication “to get you over the hump”. I was sent on my merry way. Fortunately, I have a friend and physician down near Scottsdale. I gave him my symptoms and he went to work within his network. Consensus…GBS. BTW my symptoms are classic within the spectrum of GBS. He was able to set me up with a Scottsdale physician who deals with neuro pain and mobility and familiar with GBS. She doubled my Gabba, extended both the Bac and pain medication. BTW without I can not make it to the bathroom or keep myself clean. Let me explain my conundrum…my contacts with Neurologists down in the Scottsdale are all the same. 1. Consultation visit 2. Evaluation visit 3. First visit. That’s 21 hours in the car. My threshold is ONE HOUR.
So to my rural friends…How do you manage?
August 6, 2018 at 2:54 pm
You don’t say where you reside, making it difficult for any of us to suggest nearby help for you. I’ve spent a good deal of time in New River, but the mountains off I-17 might not be the mountains you are referring to.
However, you are lucky to have a “center of excellence” in the Phoenix-Camelback area. Please contact Dr David Saperstein here:
August 6, 2018 at 6:41 pm
Thanks, Jim. I live in Lakeside=Pinetop near Show Low. I will save your info so I can see your referred Neurologist. I will need an improvement overall before I can make that trip.
August 8, 2018 at 11:02 pm
Hi. I’m trying to imagine your travel challenge…I had my own early on, but not quite like yours!
Can your local clinic/regional medical center possibly set up Skype for any meetings that are beyond your travel comfort zone? Maybe your main doctor can sit in on this type of meeting and discuss what needs to be done/looked at/??? I wouldn’t suggest that except recently I had to Skype (1st time for me!) with a Pharmacist about a family member’s prescriptions post-operation.
I realize that won’t fix it for every appointment, but if it can cut down the travel a bit, maybe???
August 22, 2018 at 8:23 am
The GBS|CIDP Foundation has a doctor to doctor consult program where your doctor can have a phone consult with the member of the Global Medical Advisory Board. If you would like to arrange this, please let me know. I am a volunteer liaison with the GBS|CIDP Foundation. or you can call the foundation office at 610-667-0131.
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