From Uw- Madison On Monday To Mayo (Rochester) Late Last Night

[jenglynn]

Hi... I created a post yesteday about my appt. with the specialist at UW-Madison who felt that I have a severe autonomic disorder than he didn't really "believe" could be POTS for two reasons: a) he is one of the doctor's who doesn't believe one can have the rapid OH drops that I get and have POTS and he feels that I am too "sick or severe" to "just have POTS". I liked him but that statement bothered me a bit. There are so many people who have differing degrees of POTS and there are many people on this forum who are severely sick. He said he would consult with other "experts" in his area but they have no autonomic specialists. He did update my Cardio with notes but he did not consult with anyone by the next day.

So the next morning, which I mentioned in a previous post, I had my first horrifying experience with complete loss of bladder control. Since then I haven't had any complete loss, but I am constantly leaking and not even realizing it. Oddly enough, when I have the urge to go, I have horrible urinary retention and CAN'T go. It will take me hours and hours to get full enough to finally be able to go and I am lucky at this point if I am going once or twice a day, intentionally anyway and I drink ALL day long. Very very conscious of that.

Anyway, called my personal cardio to report the incontinence as a new symptom. I was a little concerned because the UW Madison told me he was afraid I had a progressive, genetic disease (but NO clue what it was)... so I wake up the next morning with a brand new symptom. That was a bit too fast of progression for me. So my doctor called me back and said he had already sent an emergency referral to Mayo Clinic in Rochester and he wanted me there immediately. He felt that things are just going downhill too fast and he is worried. Weight is way down in the last month, BP is lower every day and now even sitting it is low... and with the bladder issue he thinks that we need to just get to the specialist and if he sends me to the ER as an emergency most likely they will admit me and treat me right away.

That is exactly what happened. I am currenly admitted here at Mayo Clinic and not sure how long I will be here. I am not at the autonomic center at this point (that is outpatient) but in the cardiac unit actually. But an autonomic specialist will be coming to see me tomorrow. So far I have on my team: cardiologist, 2 neurologists, endocrinologist, autonomic, genetic counselor, dietician, PT for rehab, and I am not sure if they have others up their sleeves. So far I have had extensive neuro testing which I believe they found some abnormalities but haven't consulted with me about them yet. I don't think it was major stuff, but just less feeling in my hands, feet and face and very large pupils with my left one being even larger, and poor balance and made lots of notes about other issues but like I said, no consult yet. What this means?? No clue. Neurology has a huge assortment of tests in line for me. I have pretty much been cleared already by cardiology (which I expected- sinus tachy is my only "problem" but not really a problem just the heart doing what it is supposed to do in that case). Not sure how they feel here yet about the orthostatic hypotension and a POTS diagnosis. My lying BP last night was 98/78, sitting went down to 62/44 and when I tried to stand I am not sure what it was but I fainted and my husband said that the monitor wouldn't even read it because it was so low... they could only see the top number which was 41 but couldn't read the rest. They also took me to do a chest xray which I had to stand to do (not wise and I warned him) and luckily he caught me just in time but stayed unconscious about 3 minutes after that syncope. So I guess based on my records, my low BP and two witnessed episodes of syncope they weren't going to release me to refer me to the autonomic center. The plan is to try to get as much testing done as I can while inpatient. I have no idea how long that will be. I am one of those people (like most people I am sure) who absolutely HATES being in the hospital so I did actually fight my husband over the this yesterday. I was exhausted from being upright in the car (3 hours each way to get to Madison the day before and spending much of the day in my wheelchair) just the THOUGHT of going to another medical center was just too much to take. You know how exhausting it can be to go over and over every symptom you can think of, family history, meds, etc.

But I gave in and here I am. I will keep you all updated about my experience here at Mayo. So far, I can say everyone I have seen has been very thorough, very nice and compassionate and haven't run across any arrogant or dismissive doctors at this point. The inpatient care has been outstanding. So, the past few days have been very eventful for me. I just hope that I am finally in the right place to find out what is really wrong with me. P.O.T.S., whatever I have, let me just find out so I become fairly functional again because right now I can't even be upright. 30 seconds or more and I have syncope 99% of the time. But that is a vicious circle. The longer I am bedridden, the worse the symptoms will progress. Up until this point, the doctors who could not treat me felt that until I could get specialized help I had to keep myself safe due to numerous head injuries and concussions I've had.

So that is the story!! If anyone can share their Mayo experience I would be so grateful. Like I said, I am still inpatient but I believe the autonomic dept. is outpatient in a completely different building and part of town. Tips, experiences here (good or bad), inpatient or outpatient, doctors you saw, tests, anything you could offer about what to expect would be so appreciated. If anyone had a lot of experience with Neurology that would be great too because at this point they are in charge of my case and making the decisions. Thanks everyone who took the time to read this novel. Have a wonderful rest of the week.

Jen

[anaphylaxing]

I went there with POTS as one of my main issues but wasn't fainting and never got to see the autonomic specialists because I was on steroids (which I think is helping treat my POTS). Traveled from another country so was very disappointed. Glad you are seeing the correct people. I was amazed by the efficiency. Didn't like the 6/7 AM bloodwork, constant IV even if not on IV meds and the repeating of tests that had already been done, but like I said, I don't think I ended up seeing the right people. They said probably POTS, you just need to exercise more. I liked the snacks in the kitchen---the "as much as you can fit on a tray" meals and the guest meals for my husband.

I'm glad Neuro is in charge of you.

Good Luck and keep us posted!

[maggie]

It was heart breaking to read your post. I did go to Mayo in Jacksonville for my dx but did it as an out patient. I have a mild case of pots and don't have nearly all or as difficult time as you are having with pots. The treatment was good, I really didn't like my neurologist at Mayo, but the other doctors were great as was their help who did all the tests. The sad part was that I received my dx of pots, but they don't treat in Jacksonvile. I had to find my own neurologist here in Florida who treats pots, couldn't find one, and fianlly found a neurologist who would help. I sure will be praying for you that your health takes a turn for the better.

Maggie

[RunningWild]

So sorry you are experiencing this, but it truly seems like you are in wonderful hands. I don't have any experience with Mayo, but I think the more tests they are able to run for you, the best idea they will get of what's going on. Wishing you the very best during your stay.

[potsgirl]

I was diagnosed with autonomic neuropathy at the same Mayo Clinic you're at. You sound like you're in the right place! I saw Dr. Goodman (neurologist) there, who is now back in Scottsdale (good news for me, wish you could meet with him - he's a gem), but have also heard good things about the subspecialty autonomic team in MN. They're located in the main campus of the clinic. They had me do blood work, 24-hour urine, tilt table, Qsart (sweat test in something resembling a tent), and an echocardiogram, since I've had heart problems before.

I also have very low BP, and a large leap in my HR when I stand, so by Mayo Clinic's definition I did not have POTS, but another form of dysautonomia. I was also treated earlier at Mayo for dilated cardiomyopathy and congestive heart failure, bradycardia, and ended up with a pacemaker back in 2007. About 6 months ago I was diagnosed with small fiber neuropathy, and about 2 months ago I started having seizures when I stood up - then I pass out. Sounds like we have some things in common.

In my opinion, you're at a good place to be treated, and I think you'll find a lot of empathetic doctors and kindness there. You'll go through a slew of tests, and then your main doctor will go over everything with you, and will spend a good amount of time doing this. You may want to write your questions down so you don't forget them, and you also may want your husband there with you, especially when the doctor is going through your diagnosis.

Good luck to you, and please let us know how things are going!

Jana

[janiedelite]

I went to Mayo Rochester as an outpatient and saw Dr. Fealey who is an autonomic specialist. He spent most of my initial visits listening, and absorbed every symptom and detail. He was very thorough in testing. I thought he was great.

[HopeSprings]

SO sorry this happening, but glad you are in a good place and have Doctors that are taking this very seriously. I hope they'll be able to help you. Please keep us posted.

[Clairefmartin]

I have nothing to add about Mayo - just wanted to say I hope you get the help you need and best of luck! I'm really sorry you are going through this!

[Katybug]

Sending positive thoughts your way in hopes that Mayo will give yo some answers!

[yogini]

Though it is a bummer being admitted, you are in great hands. I am sure they will find a way to get you autonomic testing/treAtment. I would stay there and don't leave til you get the tests you need! Good luck, let us know how it goes!

[kclynn]

I hope you get your answers and a good plan. My only advise would be to try to collect that reports if you can before you leave. There will be so much information that it can be overwhelming. Hopefully your husband can be there when the Drs. are talking to you and take notes.

[Chaos]

Sounds like you have a great team working on your behalf now. I sure understand your reluctance to be admitted to the hospital, but it doesn't seem like you really have a choice when you're as sick as you've been. Sending you lots of hugs along with prayers and good thoughts. Hope they can get some answers for you and some help as far as treatment...whatever name they put on your problems.

Have only been seen at Mayo as an out patient but it's been a uniformly good experience on all my visits.