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What does Mayo do when your last appointment is finished?
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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@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.
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!
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2 ReactionsYou 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.