leapscout :: the vapor trail

Mayo Update: A name, a plan

Much to tell!

So today was an education class about IBS (that would be irritable bowel, aren’t you glad I shared that detail) and the follow up with the Autonomic Specialist, Dr, Sandroni. 

The IBS class was very enlightening, but everyone – the nurse teaching the class, the nutritionist who talked to us afterward, and Dr. Sandroni – think I need to get that looked at.  Dr. Sandroni is pretty sure it’s nothing “else” causing the symptoms (since I’ve been this way… oh, my whole adult life) but said that IBS is basically a diagnosis of exclusion and I should get the fun fabulous stomach and colon checkups.  Yay. 

But!  On to the Autonomic!!

So, after much review and discussion and then asking Dr Sandroni to give it an “official name”, the words she used for what I have is “limited autonomic neuropathy”.  I was confused by this, because I thought neuropathy was tingling of the hands/feet but she said it’s just the term for nerve damage, and what’s happened is that nerves in my autonomic nervous system have been damaged.  The damage was caused by my autoimmune system going haywire at some point.  She doesn’t think it’s ongoing, because I haven’t really gotten worse over the years, so all of this is caused by the damage that happened presumably 6 or so years ago.  I mentioned the big nasty 3-day intestinal virus Scott and I both had somewhere around that time frame, and she said it didn’t have to be that – it could’ve been anything that triggered my autoimmune system going wacky: a cold, the flu, a flu shot, etc.  She also wasn’t happy about the spinal injections but didn’t seem to think it was the trigger any more than anything else random could have been. 

My prognosis is good, we’re trying Mestinon (lessens the effect of the nerve damage) and Midodrine (raises the blood pressure) first, along with a specific exercise regimen to strengthen my legs and overall improve my fitness.  No hot yoga, unfortunately – heat in general is very bad, including the Texas heat.  She thinks immunotherapy would probably be helpful but it’s expensive and since nothing specific turned up in the blood work in terms of autoimmune it would likely be a fight with insurance anyway to get it covered.  So we try this and see how we do.  She’s going to pull me in to some studies (just tracking / survey stuff, easy to do over the phone) and I’ll come back in six months to see how the new drug & exercise regimen is doing. 

So that’s about the size of it!!  I’m incredibly happy and pleased to feel like the absolute “experts” are taking charge of my care and I have a name and a probable cause.  It’s really amazing.

 

At the Mayo, Wednesday

Morning was cardio testing (the whole face breathing mask, 13 electrode monitors stuck to me, everthing -- just like a Gatorade commercial, except I'm not A-Rod). 

Afternoon was "Thermoregulatory Sweat Test", aka "We'll paint you up like the woman in Goldfinger and wait for you to turn purple in the EZ Bake Oven".  So I was on a gurney, just me and some strategically placed sheets and they dusted me everywhere with gold powder out of a giant parmesan shaker, like I was a big pizza or something.  The only place that didn't get dusted was my face under the eyebrows.  Then they rolled me into this huge compartment with heat lamps and cameras and piped in some music (Rolling Stones, thank you very much) and waited for me to sweat.  And it was HOT!!!  And itchy.  And although I like the heat, it's weird to not be able to skritch your face as you sweat. 

When I came out of the EZ Bake (about 30 minutes), all the powder had turned dark purple.  I looked like a beet!!!  It was weird, I could feel my face sweating but didn't think my body really sweat at all but it did, feet included!  And from what I could tell, I sweat pretty evenly, too -- no Gold patches anywhere where I hadn't been sweating.

Tomorrow I go to an education class on IBS (like I said, doc was concerned about my "fussy digestion" and wants me to get it looked at but a class was the best she could do in terms of Mayo scheduling this week) and then the follow up with the Autonomic doc!  I am very excited.

At the Mayo, Day 2

Wow.  Much progress.

So, this morning was Autonomic Testing.  First they tested how certain patches on my skin sweat with an electrical current stimulus on them.  Then they checked my blood pressure and heart rate while I blew as hard as I could into a pressurized thingy.  (It’s harder than it sounds).  Then came the “tilt table”.  I was laying down and resting and they strapped me onto the table, took my bp and heartrate and then the table shot up to vertical (actually only about a 70 degree angle but I didn’t realize that at the time) and they kept taking my heartrate and blood pressure and asking me how I felt.  They specifically wanted me to tell them if I was about to pass out because they didn’t want me to pass out.  I was thinking, how is this going to make me pass out, I’m just standing here, and I stand all the time without passing out.  But apparently the 70 degree angle (which I couldn’t really perceive) is the trick to reveal probs with your autonomic system because you can’t do the regular compensatory shifting of weight from foot to foot, or something like that.  I kept feeling funnier and funnier and at the end my vision started to go and I was just about to yak or pass out or both and they lowered the table so I didn’t.  So!  Success, at least in terms of validating that we’re on the right track.

After that we went back over to the Neurology desk and got on the wait list to see an autonomic doc (since my official appointment wasn’t until Aug 5) and miraculously got IN!  At 3 pm I got to see Dr Sandroni of the Autonomic Subspecialty Group.  She thinks it’s auto-immune related but is waiting on another blood test before passing final judgment.  She said auto-immune therapies will often work in this situation even when the auto-immune markers don’t show up in the blood (she said about 50% of the time they don’t) but it’s “rough and expensive” either way.  However, she’s already tweaked my medication list, sent me for a salivation test (think chewing on gauze for 5 minutes) and has me for two cardio tests tomorrow (mostly to test how in/out of shape I am and design a conditioning program to help strengthen my legs to assist in keeping the blood where it’s supposed to be) and a more extensive sweat test where they paint my body and see where I sweat (and if I sweat evenly).  Then follow ups with her and my original intake Neurologist, all finalizing on Friday morning.

She also expressed concern on my descriptions of my stomach problems and advised me to get them looked at but was pretty sure there was no way she’d be able to get me in this week with any docs up here. 

So!  Major progress.  Super impressed with the Mayo. 

At the Mayo

Well the Mayo certainly is efficient! 

The intake neurologist was 100% sure I didn’t have a spinal leak (that’s what I was originally referred here for about a million years ago) after reviewing all the notes and films I brought with me.  He also agreed that it sounded like I have dysautonomia so he cancelled the MRIs they’d had me on the books for and signed me for autonomic-related testing instead.  The only catch is that the Autonomic Neurology Subspecialty group wasn’t necessarily expecting me, so scheduling could get complicated (more on that below).

They got me moving pretty quickly though.  I had blood drawn, and then a catecholamine blood sample taken (after resting 30 minutes and then after walking around for 10 minutes) – catecholamines are your “Stress hormones”, i.e., adrenaline, noradrenaline, and dopamine.  Those are often out of whack in people with autonomic issues.  Then I had the quickest EKG of my life!   I also received a little “friend” to carry around with me and gather all my urine for 24 hours.  It’s vaguely roundish shaped so we’ve called it “Eva” (for those of you who have see Wall-E). 

Tomorrow I have the big autonomic testing, which is (according to the literature they handed me) likely going to include the tilt table test, a QSART test (where they see how you sweat), and some other stuff where you breath and blow into things while they measure how your body does.

Wednesday morning I have a follow up with the initial intake neurologist to review everything.  Right now they have me with an appointment to the Autonomic Group, but it isn’t until August 5^th.  :-/.  However, they encouraged me to show up at the neurology department after the autonomic testing tomorrow and check in for a wait list with the Autonomic specialty doc and they’ll work me in if they can.  If that doesn’t happen tomorrow I’ll wait and see what the first neurologist thinks when we check back with him on Wednesday.

Ok, the update

So I haven't posted in a while.  Sometimes you just get tired of complaining all the time, even to the empty web that always listens.

Here's the update:

1. I've gone back to work full time.  Not sure if this was a good idea or not, but, to quote Frito in Idiocracy, "I like money." 
2. I never did get the tilt table test; insurance wouldn't approve it.
3. I stopped seeing the neurologist in Georgetown.
4. I started seeing a cardiologist in College Station.  He's been excellent at "not starting from scratch" by getting ALL previous information from all my other doctors, as well as determining the best course of action for me by asking me what previous medicines worked best for me.
5. I see a Rheumatologist this week.
6. I go to the Mayo Clinic in July. 

The cardiologist confirmed the dysautonomia diagnosis without a doubt, and having re-read the description on the American Dysautonomia Institute website, I can't disagree at all.  The cardiologist is very focused on managing my symptoms rather than discovering "the cause", which I think is a sensible course of action.  I agree with this in principle and would not plan to pursue with a Rheumatologist and the Mayo except for:

1. Joint pain is a major part of my life now, whether it's related or unrelated.  And a lot of this seems to revolve around autoimmune type stuff, seems silly not to at least let a Rheumatologist rule things out.
2. If you've waited almost two years on the Mayo Clinic waiting list, seems like you should go ahead and go.
3. It would be so much easier to explain my "problem" at work if it had a "cause".  If I could say, "The injections in my back years ago caused a rare auto-immune reaction" or ... I don't know, anything other than "I have dysautonomia..." and launch on this 45-second mini-education tour of what the autonomic nervous system is and why it's important that your ANS work correctly and why it is so disabling when it doesn't work right even though I may look just fine when I manage to pull myself together for a meeting. Sounds stupid but it's hard to explain why it's so hard to travel when your blood pressure and heart rate don't react like a normal person's.

So anyway, the dysautonomia continues.  The drug cocktail from the cardiologist helps but I have good days and bad days.  The beta blocker really helps but I'm miserable until I take it mid-morning, but taking it first thing in the morning isn't the solution either.  I'm back on Topamax as well but at a low dose so I'm not as much of a dope.  And I take a tricyclic at night to help me sleep, which it does.

Oh and randomly I've discovered that alcohol makes the joint pain about a million times worse.  So now I don't drink anymore, or if I'm in a social situation where it's vaguely expected, I order a Vodka tonic, have three sips, and then switch to club soda with lime.  I no longer even try beer or wine, as both cause much worse after-effects the next day, even from just one.  Ditto whiskey unfortunately.  Oh well. 

Dysautonomia and Chronic Lyme

Thought this article was interesting, about funding research into dysautonomia caused by chronic Lyme Disease:

http://www.bada-uk.org/wordpress/?p=287

What is a tilt table test?

Thought this was a great posting all about how a tilt table test works and what the procedures are: http://hora.cpmc.columbia.edu/dept/syncope/tiltfaq.html

Denied! {Hopefully not for long!}

Two days before the scheduled tilt table test -- when I've already gotten off of work and the dear husband has gotten off of work to take me -- I get a call from the heart hospital that BC/BS has denied the test as "not medically necessary". 

I called Blue Cross Blue Shield to plead my case.  I make my  way through the provider service number, to the customer service center, to the Grievances folks, and retreat back to the customer service center.  I don't want to file a formal grievance yet, I just want to talk to a person and:

1. check to make SURE that the diagnosis put through matches what I actually have, since there was some miscommunication from the cardiologists' office to my neurologist's office
2. explain even a tiny slice of my saga -- that yes, we think I have orthostatic hypotension but just confirming that isn't what we're after, it's trying to figure out if I have something more serious.

So I don't think I've mentioned yet on this blog that the "more serious" end of the spectrum that the neurologist briefly touched on at my last visit.  I don't need to get worried yet, but lingering out there in my consciousness and within the dysautonomia category are things like Multiple System Atrophy, which used to be known as Shy-Drager's syndrome, and has a prognosis of disabled within about 5 years and death within 7 to 10.  Another "severe" possibility is Parkinson's Disease, which given my age (33) would qualify me for "Young Onset Parkinson's", which is well known now because of Michael J. Fox.  Or some other type of movement disorder (you'd be amazed how many there are) -- we're worried about this because of my right arm not moving enough when I walk, and because sometimes I don't hold my pee so well. 

See why I'd prefer to keep the process moving along swiftly?  I'm not freaked out yet, but I don't want to have to wait 30 days and file formal grievance with the insurance company to try and get the tilt table approved.

To be honest, everyone at BCBS was really sweet and I could tell they wanted to help me (that's a good feeling!).  So I have basically "one last shot" where my doctor (the neuro that is) can call their Medical Policy folks and explain that it's not just orthostatic hypotension, that's it's maybe definitely something more pesky and perhaps more serious.  So I've put in a call to my neuro's nurse to see if they can call BC/BS today. I'm keeping my fingers crossed.

No wonder dysautonomia is hard to diagnose!

Next steps

Go for my "tilt table test" on Friday, after much confusion and non-communication from cardiologists' office to the neurologists office and the insurance almost not approving the test because the cardiologists' tests showed no heart arrythmia and forgetting that the neurologist was sending me for orthostatic hypotension.  As soon as I got this straightened out with them they set me up with the test.

Cardiologist

Saw the cardiologist Monday.  He did an ECG and a treadmill stress test.  Then he sent me home with a "holter monitor" -- basically a portable recording ECG machine.  So that meant 24 hours with no bathing and those damn itchy things pasted on me.  Blech!

They're also scheduling me for a tilt table test in a couple weeks, an insurance approval thing I guess.

I had a Starbuck's "Doubleshot" this morning to try and raise my blood pressure but now I'm *w*i*r*e*d*.  I guess I didn't need that much caffeine.  I'm shaking and I can feel my heart racing.  Blech!