What does Mayo do when your last appointment is finished?

Posted by cdbanks @cdbanks, Jul 2 1:11pm

Hi:
A bit frustrated .... my husband has had every test in the book except the DaTscan, which is scheduled for the end of July. We've been back and forth to Mayo for 4 months from Chicago. Even though it's become clear to us that it's most likely Parkinsons or something neuro-muscular, we have not gotten a final diagnosis, and they can't see us for 4 more weeks. I am concerned that once we get a diagnosis, how do we find specialists in our area, does Mayo recommend or refer? And that could take weeks to get an appointment. Any practical advice would be welcome.

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cctee | @cctee | Jul 2 4:02pm

@cdbanks Not sure what their protocol is, but if it were me (knowing what I know about appt scheduling) I would do some research, find a good clinic/movement doctor in my area and book the appt. It has taken months for me to get into see specialists. Frankly, I’m wondering how your husband even got into Mayo. I was a long time patient of 25 years and after about 10 years of not going there. I was told they had no appts or waitlists, that demand was greater than supply. Did a local doctor give you a referral? If so, get your same local doctor to refer him to someone in your area for post Mayo treatment. I know there are MSA Centers of Excellence throughout the country. And, probably ALS is similar. A general Movement Specialist Neuro would probably be a good place to start, since you don’t have a firm DX yet. Best Wishes. If he has to have one of these type diseases, I pray it is PD, and not the others. God bless you a your husband both. 🙏 PS Did he have a Syn-One Biopsy or a spinal fluid test for synucleinopathies (PD, MSA, LBD and PAF) at Mayo? PSS Also, just thought of this. I did get into Cleveland Clinic, and kept calling for cancellations and got a sooner appt. If you are flexible to travel, call Mayo frequently and see if they have any sooner appts, sometimes it works perfectly. As I said I went to Mayo for years, even had brain surgery there, they were wonderful. If the drive isn’t too bad maybe you can continue being seen there for checkups.

cdbanks | @cdbanks | Jul 2 5:15pm

Thank you! Trying be proactive considering I know there will be a wait for an appointment here. Mayo is excellent, everyone is wonderful, but I just want to set up a protocol locally. Thanks for the push!

cctee | @cctee | Jul 3 7:22am

You are welcome. I’ve had a bunch of tests scattered across different clinics and practices and it makes it more difficult. Having most everything in one clinic is better. Check in and let me know how you and your husband are doing. Getting a dx for a serious condition is very stressful and quite maddening. I still don’t really have one.

booplagirl3 | @booplagirl3 | Jul 11 2:14pm

Im Going To the Mayo Clinc for the First Time . Im Hoping things like This Don't Happen as Thats the Whole Reason I'm Going There . Good Luck with Everything. My Sister Got Diagnosed With Parkinsons And It Took Almost 2 Years. Went To Columbia In NYC And She Was Put On Medication And Off You Go . Not That Impressed. This Is A Life Changing And They Need More Support In My Opinion Especially in The Beginning.

Colleen Young, Connect Director | @colleenyoung | Jul 11 3:31pm

@cdbanks, your Mayo team will assist in transitioning your husband's care to a doctor or necessary specialists in your local area. You are wise to prepare for this transition.

Mayo Clinic will prepare a care plan before you leave. They can also:
- Recommend local specialists and care services
- Work with your local doctor to transition care smoothly

What you can do
- Research local doctors and services and bring them to you final appointment to see if your Mayo team knows them
- Find out if your preferred local services are accepting new patients (if you are seeking new services) and schedule appointments. @cctee is right. Sometimes wait times can be long.
- Bring a list of questions you may have about a successful and smooth transition. Your Mayo team wants to help.

Here are a few questions I might ask:
- Can I continue to ask questions of the Mayo team through the patient portal? For how long? Is there a cost?
- Can I request an appointment with a Mayo Clinic social worker to help with the transition of care if necessary? Would it be better to find a local social worker?

Have you made additional plans or found out more info since your original post, @cdbanks?

cdbanks | @cdbanks | Jul 11 9:32pm

Thank you for the thorough response. I have been researching hospitals in our area with Parkinson's expertise (there are 3, we are lucky), but since we have no diagnosis, I'm not sure how soon I'll be able to get an appointment. Our main doctor at Mayo is an
internist, not a neurologist. I any case, after the weekend I will attempt to get an appointment here with one of the specialists. Our next appointment at Mayo is the end of the month, and hopefully we can proceed here after that ASAP.

joeynolegs | @joeynolegs | Jul 12 11:32am

What I am learning and I’m a patient at Mayo, but live in another city is that treatment plan is mostly self-care. Combined with learning about physical therapy and swallowing and speech pathology. Their treatment only goes as far as medication. Which is a simple prescription. However, maintaining your defense against further symptoms is by and large self-care. Self care is a movement exercise plan and learning how to swallow and talk. Sinemet if you take it is only one part of treatment. That’s what I’m learning. Mayo is hard to get an appointment. But I really don’t need to see the neurologist but a couple times a year. Mostly going to Mayo’s learning what you can do yourself to contain the symptoms. And then you can draw from local resources to help in movement And speech and swallowing.