So disheartened

@aaroncush, I am really sorry this discussion was hijacked, I don't believe we can move individual posts but I'm tagging @colleenyoung to see if how we can correct it. It's my bad for responding to @josmay's off topic question earlier in this discussion which generated other responses from @heisenberg34 @snoony2 @brotherchuckles80 and @juliesheff5.

This is an example of how easy it is to go off topic in a discussion and make it difficult for others since this discussion you started had nothing to do with Dupuytren's contracture until a member asked about it.

I know it's the pits to lose a neurologist that finally clicked in helping you only to lose them when they moved out of state. Have you looked to see if you might find a neurologist in the Mayo Clinic Care Network - https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members?

Thanks for the link, although it doesn't look promising - the only local is ASU Health Services and I am a bit old to go back to school😊. In Tucson it is the non-university aligned hospital and they show no specialization. Otherwise, it is small regional hospitals in the corners of AZ. The two most likely medical scenarios are early Sjogren's (tested negative) or neuro-sarcoidosis. This is not a general neurology problem. The plan of action was to try Plaquenil next, and if/when that stopped working, high-dose steroids.

Hi Aaron…sorry to hear your neurologist whom you liked left the area…I’m sure it’s so frustrating. I was curious what led your neurologist to lead in the direction of neuro sarcoidosis? I assume unique symptoms…and or some testing?
Best wishes in finding another neurologist.

Steve

Sarcoidosis runs in my family. This part of this paper (https://www.ccjm.org/content/85/10/801) describes my symptoms to a T: “Random patterns suggest an immune cause

Symptoms may also have a non–length-dependent distribution that is asymmetric, patchy, intermittent, and migratory, and can involve the face, proximal limbs, and trunk. Symptoms may vary throughout the day, eg, starting with electric-shock sensations on one side of the face, followed by perineal numbness and then tingling in the arms lasting for a few minutes to several hours. While such patterns may be seen with diabetes and other common etiologies, they often suggest an underlying immune-mediated disorder such as Sjögren syndrome or sarcoidosis.8–10 Although large fiber polyneuropathy may also be non–length-dependent, the deficits are usually fixed, with no migratory component.”

My (former) Mayo neurologist knew the author (Dr. Tavee) and agreed after all the testing that I was probably a fit.

@aaroncush, you might wish to join the discussions related to sarcoidosis. See all here:
https://connect.mayoclinic.org/search/discussions/?search=Sarcoidosis%20
See this one specific to neurosarcoidosis
- Anyone been treated for Neurosarcoidosis? What treatments work?
https://connect.mayoclinic.org/discussion/neurosarcoidosis-2b785b/

Thanks. Without a definitive diagnosis and without a doctor to support me, I am SOL. I am disappointed but not surprised the way Mayo (Phoenix) treated me - there aren’t many good options out here.

I'm sorry to hear that, with your neurologist practising elsewhere, transferring your care to another physician in neurology at Mayo Clinic was not an option. I might suggest contacting the Office of Patient Experience. I'm not sure if there is a resolution, but it would be good to tell them about your experience and disappointment.

Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu

If I thought it would help, I would contact them. I did contact them once (many, many years ago) and did not feel like it did anything.

My family doctor (also at Mayo and my doctor for longer than she has been at Mayo) described what she has been seeing - the Neurology department is moving to be consult-only and to not take on patient care anymore. If this is true, then my doctor leaving Mayo has further context as he was about patient care.

Oh my goodness, that is interesting. I'll need to find out more about that. I don't know what "consult only" practice means unless it means that you must always be referred to each appointment with a neurologist rather than establishing with them after an initial referral.

I wonder because the onset of peripheral neuropathy is what sent me to my Primary at Mayo Scottsdale last September, and it's worsened quite a bit since then. I was diagnosed with kappa free light chain MGUS. My next appointment for follow-up labs and doctor meeting is in June. I'm expecting to request a sural nerve biopsy at that point since this is affecting my balance and ability to get around.

I don't mean to highjack you here. I think we may have some similar concerns.

@nancyworld, consultative practice involves patient care. Take a condition like cancer. Patients come to Mayo Clinic for a second opinion, get an evaluation and a treatment plan. The patient has the option to continue the treatment plan at Mayo Clinic or to return to a facility closer to home. For example, some patients choose to have surgery at Mayo Clinic, but chemotherapy in the home state.