Newbie–anyone have a doctor in NM?
AnonymousSeptember 11, 2013 at 1:04 am
I suspect I have CIDP, from everything I have read (especially since I also have MGUS). However, my neurologist has been very ill herself and can’t see me until a month from now. Does anyone have a neurologist to recommend in Santa Fe or Albuquerque?
Here’s my story: I had shingles (herpes zoster) in early June, followed by gallbladder surgery June 28. A week later I had a relapse of the zoster, but the rash (at the base of my spine) resolved quickly. Since then, severe bilateral neuropathic pain has continued to spread down both legs to my feet, which are now burning. In the last 10 days it has spread to my arms and hands, as well as my face. Plus I’m starting to have weakness in arms/legs and brain fog–problems with memory, language, and speaking.
At first my neurologist thought it was shingles without rash (zoster sine herpete). But because she has been sick, I’ve been unable to see her to update her. So I’ve had no nerve conduction studies or other tests (except to rule out multiple myeloma). I have a referral to the Univ. of New Mexico, but they take 4-6 weeks just to decide whether to accept me as a patient, and then another 6 weeks to get an appointment.
I’m alarmed at how quickly this is spreading and worsening. It could even be GBS. I don’t know at what point it turned from shingles without rash I know that it’s important to get treatment quickly. All my doctors say I’ve got to see a neurologist, and soon. But I don’t think an ER would consider it an emergency.
September 11, 2013 at 3:30 am
It isn’t an ER emergency yet, but it is certainly urgent that you see a neurologist as soon as you can arrange it. Why hasn’t your primary care physician referred you to one?
September 11, 2013 at 10:06 pm
MGUS was previously discussed here: http://www.gbs-cidp.org/topic/relationship-between-iga-pdn-and-anti-mag-pdn-mgus-associated-demyelinating-neuropath
A more comprehensive technical review of MGUS vs. other peripheral neuropathies is available here: http://www.guideline.gov/content.aspx?id=34913
If you can handle a 6-7 hour drive to Phoenix, there is a ‘Center of Excellence’ that can probably help you:
Banner Good Samaritan Medical Center
5090 North 40th St.
Phoenix, AZ 85018
Adult Care: Todd D. Levine, MD
David S. Saperstein, MD
The GBS-CIDP Foundation has a chapter in New Mexico that may be able to provide a referral to a nearby Neurologist, contact:
Fairview NM 87533
505 929 2815
You should get treatment right away to reduce the risk of damage to the myelin.
Hope you find treatment quickly and are feeling better soon.
AnonymousSeptember 12, 2013 at 12:54 am
GH, I agree it’s urgent, and I do have a referral to a neurologist. I guess the real problem is the doctor shortage in New Mexico. My neurologist had emergency surgery the day of my appointment and rescheduled me 6 weeks later (4 weeks away now); she is working only half-time, and she’s the best neurologist in Santa Fe. But no other neurologist seems to be able to see me sooner, even in Albuquerque.
Jim-LA, I seem to have only trace amounts of a paraprotein, so it’s doubtful that it’s causing the neuropathy, at least for now. But thanks for the information. And thanks for the information on the NM contact–I will try to reach her,
Unfortunately, my insurance won’t cover anyone out of state, so I can’t afford to go to Phoenix. Wish I could!
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