ken870

nowwhat my neurologist gave me this diagnosis but said she could not treat me and referred me to mayo in minnesota because in her words it was the best place for me to go for treatment and my cardiologist agreed you see they know about pots and the autonomic nervous system but said i needed a specialist.

mayo in minnesota has my medical records there and they tell me when they had an opening i would see either doctor low,fealey or sandroni but the main thing i am discouraged about is my records tell them i have severe autonomic neuropathy,pots and peripheal neuropathy yet i am having to wait this long and i am bedridden and in a wheelchair when i go out anywhere.p.s. if i wanted too how would i get my records transfered to the arizona clinic and does the arizona clinic take medicare.

can someone please tell me why it is taking me so long to get an appointment to the mayo clinic in minnesota for pots treatments i have been on the waiting list now for the last six months and they tell me it could be six months or a year longer.

Ken,

Did you have a doctor's referral? That should speed things up significantly....Also, they tend to not be as busy in the colder months, as it get very cold there. They have an underground network with some of the hotels, though, that connect you to the main clinic, so chances are you won't ever have to step outside if you don't want to!

yes i had a referral they accepted my doctors referral way back in feburary but i am still on the waiting list because they tell me they are booked up with patients so now that theycouldnt give me an appointment but if i needed to see them i could have my doctor call and tell them that i need to be seen soon and the doctor would look at my records and decide if i could be bumped up to see them.

Thanks! I do have an electrophysiologist, but he told me that he couldn't help me anymore than he has and that I should go to a pain clinic and figure out a way to manage the rest, or go back to my primary doctor. She think I'm crazy and sent my to a psychologist, so I don't really like that option. I'm not quite ready to give up yet!

It sounds like the Mayo clinic in Rochester is where it's at... hopefully I can get an appointment, they are pretty dang busy!

I sent you a message about who we see at Mayo.

i know mayo is busy i have been on their waiting list since feburary and i called them yesterday and they told me it still could be as late as august or september before i get an appointment.

i have been on the mayo clinic waiting list for two months now and i was wondering does anybody know how long you have to be on the waiting list before you get called for an appointment.

I have never heard of that before. Have you tried emailing them? You could always sign up using a different email address. You will have to redo your whole profile though.

that is what i had to do use a different e-mail addressand redo my profile but it is taking a long time getting all of my friendsback on facebook.

has anyone ever been kicked off of facebook because they kicked me off last week and i was wondering if i can ever get back on facebook again.p.s. they said i was kicked off because i added too many friends in one days time.

i was wondering do you think the sore places on our scalp could be from the lack of blood flow to the brain when we stand and the blood pools in the stomach ,feet,and legs also keep me in your prayers as i am soon going to minnesotas mayo clinic to see if they can help treat my pots.

jennifer i have had the same sore spot on the back of my head like you have now for thelast seven years and all the docs tell me is that is either lesions or i have had the sore spot on my head all my life.

this is for everybody that has seen doctor low in minnesotas mayo clinic do you go into the hospital for tests or does he do his testing in the clinic also what motels are good to stay at while you are there i heard th kahler motel is good.p.s. does anybody know how much the testing cost and is there a place like a hospitatily house to stay at.

this is kenand i was wondering if anybody has been to the mayo clinic in minnesota i went back to my neuroligst yesterday because i had got worse and she told me that i needed to go to the mayo clinic and see doctor low so how do you o about getting a refferal and is it a good place to go to get treatment.

Like most of you, I only really leave the house for doctor appointments and church (my church has private rooms for nurshing mothers etc, with comfy recliners and tvs to watch the service, so I can sit in there with a few friends to enjoy fellowship and the sermon without the noise & confusion!). It's a bit of a relief to hear from others (especially other 20-somethings!) in the same situation. Facebook has a way to chat online with other members, so that's one way we could conect with each other-- setting up a time to meet online. Anyone interested?

Erin (fscerin@yahoo.com)

what is your name on facebook because i am homebound too and have already connected to a lot of dinet friends and would like to add you as a friend also.

does he have good results treating stomach pooling.

Jan you said sleep apnea caused you to have lesions on your brain and brainstem and i was wondering if these lesions caused knots to come up on your head and temples because i have knots on my head and temples that are painful to the touch and i was wondering if anybody else with sleep apnea had painful knots in their head and temples.

i just had a sleep study done thursday night and have not got back the results so i was wondering if anybody knew if sleep apnea was a symptom of pots and does anyone on this forum have sleep apnea.

did you get my message about your idea about going to vanderbilt and did you go to their website and fill out their forms and if you did did they set up an appointment for you to go into the research study.

male,46 yrs old and had pots since i was 40 years old

That's great! You've been so sick and I'm glad you have some hope. I hope you are able to start getting stronger. It has helped my symptoms somewhat to work on getting my lower body stronger. I hope the meds help your heartrate and your pain! Lyrica helped my pain tons, I just wish it didn't make me so constipated. But my mom takes it without any problems except being "fuzzy headed." Would we know the difference though with all our brain fog???

are you still taking lyrica and is it still helping you also they gave me propranolol for pots and somedody told me propranolol is elavil which they also use for fibromyalgia is that true.

how is the sweat test suppose to be like they did it on me an i sweating a lot but i thought when you sweating a lot the test was abnormal but they said mine was normal.

has anyone taken propranolol for pots because vanderbilt just gave me this drug and i was wondering has it helped anyone with their pots.

I take it at 20mg three times a day, I started it twice a day and after a week doc said to go to three... it seems to have helped me but I also take Midodrine (50 mg day) which for me the combo seems to do well in helping me perform mild tasks. I had tried the beta blocker alone which did not keep me from fainting.

i take it at 20mg one time a day per vanderbilts instructions and i was wondering how long do you have to take it to know if it is going to help or not.

has anyone taken propranolol for pots because vanderbilt just gave me this drug and i was wondering has it helped anyone with their pots.

i have just got home from vanderbilt and doctor roberston and biggaggoni diagnosed me with pots,orthostatic intolerance, chronic fatigue syndrome,autonomic neuropathy and fibromyalgia and the medicines they gave me was lyrica and propranolol for my fibromyalgia and pots and to all that is wondering if it is a good place to go i am here to tell you that you could not find a better place to go because the doctors there and the nurses plus bonnie back are some of the most special people that you would ever want to meet and the time i was there to the time i left they was right there asking all the time what they could do for me and how they could help me feel better and one other thing doctor roberston said was that pots had me bedridden and to get back into shape he wanted me to change my lifestyle by trying to move as much as i can each day and possibly in a year or two that i would not be bedridden like i am now.

this is just a note to tell everybody that we will be headed to vanderbilt tommorrow morning and we will stay in the holiday inn select that night before going into the research study monday so think of me and pray that they can find the right treatment and medicines that will help me get some quality of life and chrissy did you get in touch with vanderbilt and will they let you get into a study because i replied back to your message and did not hear back from you.

bonnie black e-mailed me and said my parents could stay in the hospital hospitality house and i was wondering if anybodys relatives had stayed there and is it a good place to stay and what is the cost of staying there.