Heard from Mayo

[Guest tearose]

I promised to give the answers once they came in...

First, I want to let you know that doctor just spent 35 minutes on the phone with me and was as kind and informative and professional and I'm still in shock!

My pelvic wasting question was whether people with higher levels of norepinepherine flooding are more suseptable to muscle wasting/weakness. The answer is no. The fatigue that comes from our symptoms is indirectly responsible however, if, because we are symptomatic we unable to sustain activity. Translation: we may feel weak and demonstrate weakness but our muscles are still there and willing an able to work for us. In only extremely rare cases do muscles actually waste/deteriorate beyond rebuilding.

He did say that norepinepherine makes the sphincter close and retain the urine in the bladder. The bladder may become stretched and inflamed. If I don't get better voiding results on my future studies I may have some unpleasant measures to take to resolve this. I now have to explore my bladder issuses again with the urogynecologist.

My sleep study question was: are the hundreds of tiny sleep awakenings I experience (with no awareness and not at all apnea) symptoms of POTS during sleep?

The answer is: It could be. We need further information. This definitely can be the reason for non restorative sleep. For POTS symptoms to be observed during sleep, constant blood pressure monitoring should also have been done!!! I even suggested this to the sleep study doctor and he brushed it off!!! There is an instrument called a phena press (sp) that records blood pressure constantly. So, I'll be following up with the sleep study doctor.

That's the news from the rose garden!

Hope I didn't bore you with all the details.

I'm just about to start processing it all...bye for now, tearose

[geneva]

Tearose, not boring at all....rather very interesting. I am pleased that you had an obviously productive conversation. How considerate that he spent so long on the phone with you. good luck processing and determining your next steps.

[EarthMother]

Dear Tearose,

Thank you SO much for sharing. You are a true pioneer. We are grateful to you for blazing the way.

Good luck on your continued adventures.

EM

[Jillybeanbme]

Tearose,

I'm happy you got some answers.

Could you maybe answer some questions for me about Mayo? I'm still learning. What can the Mayo Clinic do for us that our other doctors can not? Are we just research subjects for them? The closest one to me is Jacksonville.

Thank you for sharing your knowledge!

Take care,

Jill

[Ernie]

Thanks Tearose for sharing your new knowledge. I am very interested by the content of your post because I have similar symptoms as you do so you are also helping me.

When I did my sleep study I asked to have constant BP monitoring and they did not want to take any BP reading saying that it would wake me up. I also asked them to take my catecholamines while I am asleep and the sleep specialist said that it was a good idea but it was not in the protocol. So I am just about like you. I don't know if I wake up because of the adrenaline rush or something else.

Ernie

[calypso]

Tearose,

Thanks for sharing.

I was told by my cardiologist that my muscles can't be wasting because I would have low albumin (blood protein level). But I just don't know where they are right now. Muscles, are you out there? Please come back!

Amy

[DawnA]

Interesting stuff Tearose...thank you for sharing. It is great to hear that the Dr spent 35 min with you on the phone. That is soo rare. I am glad you got answers to your questions.

Dawn A

[kristinp29]

That's very interesting! Thanks for sharing!

Don't you love it when doctors actually take the time to talk with you?!??!

[goldicedance]

Jillybeanbe,

The Mayo Clinic is generally a referral center. Your doctor generally has to refer you to a specialist. Referral centers are generlly not places you would go for you day-to-day treatment.

I am not familiar with the Mayo in Jacksonville. The Mayo is Rochester has one of the best autonomic testing labs in the world. Moreover, they have experts on POTS who are doing research to help better our treatment.

Yesterday I saw my cardiologist for a 3-month checkup. He was glad that I had gone to the Mayo. While he is super smart and open-mined, he knows that his knowledge of POTS is liminted as well as current treatment modalities. As he says, he doesn't see many patients with POTS; therefore, he admits his knowledge base on POTS is lacking.

The Mayo is one of the few centers in the US that really specialize in dysautonomia, including POTS. The docs can provide excellent advice with regard to meds. They also provide great psychological advice in that they reinforce that you/us are not crazy, that the symptoms are not in our head, and that POTS as a syndrome raises its head in many different ways.

That's my thoughts about the Mayo!

Lois

[Guest tearose]

Oops Jill! I forgot to answer! I'm so glad Lois picked up on it! Talk about brain fog!

So, my sense of the value of a place like Mayo or Vanderbilt or any top notch Testing facility is that they can do a complete work up on the autonomic nervous system. Our local doctors can do only as well as the equipment and knowledge they have to find an accurate diagnosis. I am personally familiar withe Mayo MN. I would suggest you call out to jacksonville to see if they have the same equipment as Minn. (I don't believe they do, but check it out)

I had no idea the full extent of my dysautonomia and my fantastic local medical team was not able to learn enough to help me. After my diagnosis at Mayo, my neurologist worked with me on a "custom made" treatment plan and we speak by phone once or twice a year to keep tabs on me and what is changing.

I simply believe anyone that needs to get a better handle on what is going on in their body will have a more complete understanding after a more complete workup.

Are you looking into more testing Jill? How are you doing?

best regards, tearose

[yogini]

Jill,

I agree with Lois and Tea. I would add that I didn't feel like a research subject at all - it's just like going for a a bunch of regular doctors appointments and tests. If you live near Mayo anyway and especially if you can get your insurance to cover it, I would go for it. I went to MN, but I think others on the board have had a good experience in FL.

-Rita

[Laura]

Hi! I just wanted to say thank-you so much everyone for sharing your experiences! I do not have access to the facilities that you go to, so I am learning alot through all of your posts. I am so grateful for every new bit of information that you all provide and it is very interesting to see how things work in the States. This site has been such a blessing! Thanks! Laura!

[ginger]

Hi Tearose--

How wonderful to have such a long conversation. I'm more excited than ever reading this thread to get to Mayo. I'm counting down...

Very interesting reading! Don't hesitate to post more about your conditions and experience. We're all learning from them.

Just some reassurance for you... If your voiding is still an issue, don't fret over what you might have to do. I have to do the self-cath thing. Started out self-cathing throughout day back in April when I couldn't void at all or barely. Now, self-cath in am and then once in pm before bed. Timed voids rest of day, every 3 hours. Actually, the last couple weeks I've actually felt my bladder again. Really weird. Point is, it's not as bad as it sounds. I was mortified at first, but found out cathing is really easy and can even do it in public if I have to.

So, whether it's cathing, or new drug, or another procedure, you'll persevere! And, if you're bladder improves, SUPER! Just think of what you've dealt with thus far; all the while, you help all of us here!

Ginger

[Guest tearose]

Hi all! More followup:

The sleep study doctor said he will look into a larger sleep study center that can do constant bp monitoring...I thought to myself...hmmm, now why didn't we discuss this option before I did the first study? I had after all asked for it! I'll get over it, it's just a darn shame! And I wonder if the insurance company is going to have a problem with another study. Oh, I'm just complaining a little to get it out of my system!! I'll see what develops and let you know.

As for the pelvic issues. Yes Ginger, if my voiding doesn't improve I'll have to discuss the self-cath possibilities. I am still waiting to hear from the urogyn after he brainstorms with the Mayo neurologist (Fealey). Is your bladder improving Ginger? How are you managing?

Just as with any muscle group, we are supposed to keep our muscles in shape! I have started to faithfully do the "kegel" exercises that all women are encouraged to do. These are to help women to strengthen pelvic muscles and maintain good bladder function.

more news as it happens, thank you all for your support, tearose

[ginger]

Tearose--

My bladder has improved somewhat very recently. Until just a few weeks ago I usually could not feel my bladder filling up. I could go all day and not go to the bathroom--that's despite lots of fluid intake. And, that's why timed voids. Every 3 hours go! no matter what! And that's why self-cath am and pm to be sure I get the bladder cleared out at least a couple times per day.

When the bladder was at its worst and I couldn't go at all last Spring, that's when they taught me how to cath (it is easy, really, more of a nuisance). I started with oxybucontin (sp?) Ditropan for spasms and then FloMax to help get the flow going. The FloMax is actually a "male" drug, but they are having success in women. One catch, the cardio, once we discoverd POTS, said to immediatly stop the FloMax because it increases HR. So, stopped it. I now use Sanctura instead of Ditorpan for the spasms that accompany the retention. Fewer side effects. My "flow" is much worse during day when I'm upright putting compression on nerves down there. Sometimes just dribbles out, although better last few weeks that way, too. Flow is better after being recumbant for awhile.

Here's what a great urologist taught me, in words I could follow... there are 2 systems at work in the bladder. One is autonomic. One is pure muscular response w/o ANS trigger. So, as your bladder fills, it's like a car's fuel tank. At a certain point, if the sensor works, it tells your bladder, "hey, it's time to empty" and then sets in motion the whole emptying process. BUT, if the sensor (ANS) doesn't work, then the bladder overfills and/or retains. Then, the bladder muscles stretch and say, "hey, up there, something's up, we're a little full down here." And if the ANS doesn't respond, the bladder spasms on its own to get the urine out. This can give symptoms of incontinence or leaking. So, you can actually have both spasms and retention at the same time. Weird, huh.

This is my case. I retain, but also leak and sometimes have spasms. The Sanctura has really helped the spasms. My recent frustration is pain in removing the cath from the urethra. I'm afraid my urethra might be constricting and spasming. Local urologist gave me some ladicaine to use. So, hopefully address that at Mayo. I also have a cystocele, where the bladder has dropped into the vaginal space.

Again, don't worry about the cath thing. It's not biggie. The home use ones are clear plastic about 6" long and narrow, fit neatly in purse and easy to use. Much less threatening than the ones you see in doctor's office. And, I'll tell ya, I feel much more secure and safe knowing that if I have an emergency and can't go again, I've got the emergency tool right in my possession and know how to use it. Thus, less anxiety! And, I've threatened close friends to get it out and use it on them, if they don't quit giving me hard time about something!

Good luck with all of that Tea!

Ginger

PS, I did a few Kegels while I wrote this

[Jillybeanbme]

Tearose & Lois,

Thank you for giving me more insight on Mayo.

Tearose you said you had no idea the full extent of your dysautonomia before going there. Well, I guess that's what I want as well. I don't see Dr. Thompson again until Feb 10 to get the results of my tilt I'm having Tuesday. When I see him I would like to have a list of new questions prepared about just what is the full extent of my dysautonomia. What are some of the test you had at Mayo that you were not able to get locally? Since I work at a medical facility, I could find out before my next appt. if those tests or equipment are available here.

As to how have I been? Other than some recent awful migraines, not too bad. I was having some digestive problems, but after a wonderful suggestion from Opus, I cut bread out of my diet and I'm doing much better with that.

Thank you for all of your help and knowledge.

Take care,

Jill

[Jersey Girl]

Dear Tearose, Thanks so much for sharing the particulars of your phone conversation with the Mayo doc. It helps us all to better understand what's happening to us.

Dear Ginger, Thanks for sharing about the bladder issues. If I get that way I'll know what to do. At this point I just run alot to the bathroom frequently throughout the day.

Take care, Martha

[Guest tearose]

Glad it was helpful Martha.

Jill, the two that dx me the best in my opinion were; the laying down, sitting and standing blood tests and the thermo-regualtory -sweat-test. This thermo one actuallly found the small fibre damage so I felt so relieved that Mayo, MN had it. I don't know how else one can document the small fiber damage that is seen in baroreceptor reflex failure.

Ginger, I can't thank you enough for your open and complete information. I really didn't know how I was going to be able to discuss this with the doctor because I started to feel sorry for myself and go into a little denial thinking, "maybe I don't even have to go there"...now I am prepared for whatever develops, because of your kindness....heartfelt thanks!

best wishes all, tearose