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Dr Grubb or Mayo?


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I just went to see my ANS Dr last week. He wants me to get a workup at Mayo with dr Low and already has spoken with him and faxed over my info so I am now waiting to hear from them for an appt.

Problem is I also have a Grubb appt Next month. I was really looking forward to seeing him, but as it is right now I do not have enough info to bring him , and feel it would be a wasted trip until I get full results from mayo. I have learned many new things since last week, and there have been several changes, so I hate to go see Dr Grubb if I do not have the proper testing and information at hand.

Although I am worried if I cancel I will never be able to get back in to see him...

My question is: Will Dr Low actually suggest medications or will he just do testing and leave it up to my ANS dr here...?

Have any of you tried to make a new patient appt with dr Grubb and do you know how long the waiting list is to see him?

Thanks B)

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Thank you Steph! I definetly want to see both dr's , I guess I am not sure what sequence to see them in. But if Dr Grubb is so booked up and his health is still not the greatest then maybe I should keep him on the 11th..... I have it booked.

My ANS Dr told me I would get an appt very soon with Mayo... Hmmmm I wonder if I will...it seems to me from what I read on here many of you have waited quite a while.....

Would you mind telling me a little about your Mayo experience? What kinds of testing they did? Did you go off all your meds? How were the Dr's there?

Thanks for always responding to my posts and helping me..... Your advise always makes such a big difference :)

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Dr. Low does suggest medication. He writes a letter to your doctor with his recommendations. I have been there twice. He ordered the tilt table, QSART which is a test with electrodes and they test the nerves, it just causes a little burning sensation when they stimulate the different nerves. A sweat test- they cover you with powder then put you in a little tube and turn on the heat to see where you sweat and if your sweat pattern is abnormal (the powder changes color where you sweat. He also does your epinephrine and norepinephrine levels lying still 1/2 hour in a dark room and then standing. Lots of blood tests and usually a 24 hour urine. It's worth the trip. Dr Low considers himself a "consultant" and has your primary physician treat you.


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I saw Dr. Low, my doc sent my records to him in advance and he accepted me. I was offerred an appointment in 3-4 weeks. I had to reschedule 3x because of insurance and each time I was offerred an appointment within the month. He does go over your medications with you and explain. He is very I want to say conservative in his demeanor and I didn't ask questions as I normally would have. That not like me......I was a little overwhelmed. They found things that had been problems for years and changed some meds and I have felt so much better.

I couldn't get into see Dr. Grubb for 8 months at the t\ime Now we know why.

Brainstorm----If you can get the mayo done and have the results of tests, then see Dr. Grubb,even if you have to pay it would only be for a Dr. appt.????!!!!!!!

Bottom line is to get the care you need and is available as soon as possible.

Blessings, Miriam :)

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Thank you Miriam, Steph, and Dawn :)

Steph - The last thing I think is that you are crazy! It does seem like we have a lot in common and it is so reassuring to hear your experiences! Thank you so much..... :)

Also Miriam and Dawn...thank you for providing your Mayo experience as well....

I called Mayo today and Dr Low is out of the office until next week. The receptionist said the next available appt was in June, but then my ANS Dr here told me I probably would get in within the month b/c he will be speaking with Dr Low... So I am kind of up in the air with Dr plans.... If I get a call from Mayo in the next week or so I have to reschedual Grubb. I honestly hope I can get to Grubb before hand.... I guess I should feel lucky that I have an opportunity to see both Dr's,,,,I am greatful for that!

Like you said steph: I have heard so many amazing things about Dr Grubb, I would hate to pass up an opportunity.....and if he is not a stickler for tests then I guess I can go whether I do Mayo first or second.

As of now I am off all meds..I stopped my DDAVP Last week, so I am only doing salt and electrolite solution.... But I am wondering if I should go off even the sale and electro drinks while I am there..... Will that swew the tests if I continue on the salt tabs etc while testing? I just want the best results possible since we are only doing this once ...definetly cant afford it again :o

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Guest tearose

Hi Jenn!

I have been to Mayo, MN twice and have no regrets. Both times offered me invaluable information that improved the quality of my life!!! Please don't worry about the meds right now. When they give you your appointment date, they will tell you all you need to know and who to call if you have any questions! Be sure to "get ready" for the trip there. You will need to allow two weeks in the Mayo Clinic, in my opinion, for them to do the most comprehensive work-up and diagnosis for you. Remember, they do the diagnosis, and will do a treatment plan but not the maintenance for you. You will sit before the all-powerful and knowledgeable (Dr. Low or Dr. Fealey ) and you must be ready to ask a zillion questions right then and there about your body and their findings!!! That alone makes the trip worthwhile.

I have not had the opportunity to have Dr. Grubb as my physician however, his reputation precedes him! I also hope you "treat" yourself to a consultation with him as well!

good luck with the planning, tearose

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Hello Tearose, Steph and Ernie - You guys are SO wonderful! You have helped me so much in being able to make good health decisions.... Thank you thank you!!

Tearose, I know you are a Mayo "pro" so I am sure I will have some questions when the time comes.... !!

Steph, again your support means so much :angry: It makes me laugh b/c it really does seem we have a similar bodily "make up"... The 2 of us together would have Put Subway out of liquid for the day!! LOL

And yes, when the time comes I guess I will be told what I can and cannot eat/drink.... The not drinking will be hard.

My husband will be going with me, and I am sure we will rent a car so I am hoping to have some time to site see a bit......

Ernie: Thank you SO much for your input! Yes Our insurance covers both visits, its just the airfare and Hotel/food that will cost.... Its hard b/c right now we are in such a finacial bind with all this....

I have been battling a respiratory virus for the last few days, and am hoping/praying that I will be well enough to fly in a week or so......

Happy Easter to all of you! I hope you all have a healthy day :o

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