Mayo Clinic in MN

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Grace89

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I got the call Friday that my neurologist got the referral in at Mayo and they will see me on 1/7. Unfortunately that is a Thursday and my testing they said would be multiple days. I was told to plan to be there a week.
I'm looking at hotels and flights just trying to plan. Anyone familiar with this process?
 
At the va, steve was in for 4 days. Everyone comes for an initial eval...pt,ot, neuro, pulmo, dietician etc. Then they each identify issues in their areas and how they are contributing across specialties. Then the rounds of visits begin again. Each round has testing, doctor or specialist visits, and suggestions.

Steve's first day was vials of blood, respiratory therapy, chest xray, and a neuro eval. The next day the fun started. Each day started at 7 am(blood and vitals earlier) and continued til 6pm. Sometimes later depending on testing needed. They were exhausting days

Steve was an inpatient....
 
I am thinking since this is diagnostic it will heavy on the testing and not so much the pt ot dietary. I have not been to Mayo either so guessing but I do research visits at NIH that are 3 days of tests- essentially a diagnostic workup each visit. I also suspect some of it will be decided as they go along. Depending on what they think and find they will want certain tests and perhaps not want others. Bring every medical record with you- notes, labs test results and the actual discs for MRIs They likely will want to repeat much of it but having the records may save you one of 2 things. If they were sent ahead still bring your own copies and make sure you have one set of records that you keep. Read the sticky on second opinions. Hopefully someone who has been to Mayo will chime in
 
Summer, we went to that Mayo and were there for only 3 days- but also had to plan for longer. It just depends on how well they can schedule all the appointments. This was really a "third" opinion, recommended by our Michigan neurologist, so that may have been why it was less time.
I would strongly recommend flying Southwest if they fly out of your area. They will allow you to change your return flight with no charge so if you get done early. Think all the others tack on a penalty of over $100 dollars for each person.
Also, be sure when you book a hotel, tell them you are a Mayo patient, as some hotels will give a discount for this.
You will find Mayo very efficient and schedules are adhered to well, so not a lot of wasted time. Some of the hotels are connected by underground walkways, protecting from the winter weather. Something to consider, as the walk is doable if you still are walking okay. Good luck. Donna
 
I started my test on a Thursday at Mayo Rochester. I ended up having appointments on the following Monday and Tuesday. It all depends on what additional tests they decide to do and scheduling. The Kahler Grand was very convenient, especially if you want to go back to the room to relax between appointments. The Kahler Grand is also an older motel and the rooms are a bit smaller than others. Be prepared to pay extra for parking. Days Inn is also close and cheaper. I have not stayed at that Days Inn. The second time we went to Rochester we stayed at Kahler Inn. It is maybe a block farther from your appointments. The restaurants at both Kahler Grand and Kahler Inn were ok. There are better restaurants down the street.
 
If you end up flying into Minneapolis/St Paul there are shuttles to Mayo Rochester.
 
Flight and hotel booked to head to Rochester in a few weeks. Now I'm starting to question this decision. I've met some others this week that have told me it is not the place to go for a second opinion but rather more for clinic and trials. The few that have told me this left Mayo with more questions than answers. A few even said they had to wait over a year for a diagnosis.
I'm about to lose my mind worrying about this and needing answers. I do not want to waste time or money ($2500 invested in this trip already).

I'm making a call this morning to Houston Methodist. I have heard some great things about the program there and Dr. Appel.
 
At Mayo Rochester I received my diagnosis on Day 4.
 
Thank you Van for replying and giving me some hope. I'm sure there will always be someone who has had a negative experience.

Did you see a neurologist that was a neuromuscular/ALS specialist?

I was told that Mayo doesn't have a specialist..?.. I don't even know how that is possible.
 
as we previously discussed there are several centers closer to you so Mayo isn't your only option. I only reiterate this since you are concerned about the cost. If this is for a 2nd opinion and there are no other differentials on the table, that's a lot of cash.

The 3-day diagnostic process at Methodist, since you bring that up, is said to be top-notch.

Best,
Laurie
 
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Thanks Laurie! Yea I've been looking at your map and looking at options. My wonderful (being sarcastic) unknowing Dr here in Mississippi is willing to refer where ever I want to go, but he recommended Mayo and JH. Mayo was able to see me the soonest so we jumped on it.
I'm not canceling Mayo just yet....I have my nurse working on the referral to Methodist. That distance would be doable to drive and 3 days sounds a lot better than the 7 Mayo is asking for! I appreciate all your help.
 
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We are back from our unexpectedly extended Thanksgiving trip and I thought I should chime in with my experience.

I had a confusing diagnostic process. To sort things out, I booked a trip to the Mayo Clinic in Rochester, MN.

The initial trip was for 1 week. I saw wonderful doctors and things went very smoothly. I was tested for many, many things. I was very impressed with everyone and their overall process. I think the care I received was outstanding and the coordination between doctors in different specialties was just what I was looking for.

After 1 week, it was obvious I would need another visit, so a month later we returned for another week. But, remember, my case was quite complex (I have other rare conditions that confuse the picture quite a bit).

There are other well-regarded centers to consider. Based on my experience, I can heartily recommend the Mayo Clinic in Rochester.

We flew Southwest into Minneapolis and rode a shuttle to our hotel in Rochester. That worked out very well for us.

We went in January and again in February. Be prepared for cold. Minnesota cold. The great news is that many of the hotels are connected to the Mayo Clinic by elevated, enclosed walkways. We did not have to go outside very much.

The biggest surprise was the absolute lack of healthy eating alternatives around the Mayo Clinic. There is plenty of good food, but a paucity of healthy food.

Steve
 
Steve,
Thank you for sharing your experience with me. I need to read positive right now.

I called Mayo yesterday and asked about the Dr. I would see. They have me scheduled with Dr. Priya Dhawan. Unfortunately I can't find much on her. She isn't even listed on the Mayo site as a physician. Which again made me feel uneasy about all of this.
I'm so desperate for a 2nd diagnosis that I'm willing to take the time and spend the money to go to Mayo.
So far every where I have called that is more local (4-8 hours of me) has a booked schedule and it will be months.

Again I really appreciate your response and I'm glad that you had a good experience.
Take Care!
 
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Looking her up it looks loke she probably just finished her training at Mayo Scottsdale. Likely in July. If her training was a neuromuscular fellowship that is not necessarily a terrible thing. There is a doctor at my clinic who also graduated fellowship this summer and is now an attending. If I did not already have a terrific neuro I would see her in a heartbeat and I have recommended her. She has not shown up on the website either yet but I know she is there. But I would hesitate if you can not get them to tell you her credentials/ training. Can you get your money back for any of this trip if you decide to go somewhere else?
 
Thanks Nikki. I had seen a few things on her from Scottsdale but just not enough to make me feel comfortable.

I have already canceled my hotel booking but holding off on the flights. I booked them through southwest so shouldn't be a big deal to cancel if I have to.

I'm praying that I will hear back from Houston Methodist. They returned my call yesterday and of course referral only. I contacted my nurse and gave her the number to call. The girl who called from Houston was very specific in that when my Drs office called for the referral that she would send them a list of what was needed. They would need that exact information and nothing more or less would be accepted. Once everything was received it would be presented to the physicians and a decision would be made within 3-4 days.
I'm just worried with the holidays that I won't get a answer from them before I am scheduled to be at Mayo.

Bring on the waiting game.... :)
 
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