Finally going to Vanderbilt....

[cathyst]

It was a hard decision to make.  All of my dr's, except for one, feel like I am wasting my time, money and energy.  I just feel like I need to talk to dr's that live and breathe autonomic dysfunctoni.  There is also another problem, overlapping that we have to figure out.

I was dx'ed with Autonomic large and small fiber neuropathy and spend most of my live, one my back in bed. Anyone else?  I do not have the problem with fainting, but am very sick.

My appt. is 1/28 and I am a little nervous and slowly realizing that I am more in denial than I thought.

Does anyone have an opinion about my choice?

Thank you-

Cathy

[cathyst]

It really is frustrating and confusing.  They didn't give me any suggestions for medications.  I am not sure if they tested me for neuropathy, but I do believe that I have it, and have had it for years.  Apparently, that is what was dx'd with the emg/nerve conduction test.  I just don't know if it is autonomic or not....or is there a difference?  As you can see, I really don't know much about this.

I have been dx'ed with probable PPMS, but that is now up in the air.  These overlapping issues make it even more difficult to sort the issues out.  I am throwing in the towel for now.  See what new symptoms arise, then address them.

Thank you for your encouragement!
Cathy

[laurab2818]

Sounds frustrating and confusing.  Did Vanderbilt give you suggestions on medications to try?  Did Vanderbilt test you for neuropathy and then conclude that you don't have it?  I don't know what tests are done for that but there are people in this forum who probably know.  You can call Vanderbilt back with questions about the evaluation and their role in treating you.

I have POTS and am bedbound at times. I have to pace my activities very carefully.

Hang in there.

[CHRISTYDRAKE]

My son has POTS and has been in bed for most of the last year.  He usually can get up in the evenings and move some about the house.  His main complaint is nausea though.  He doesn't faint either.  He has also been diagnosed with small fiber neuropathy.

When we were in Cleveland, the person running some of our autonomic tests told us the good thing about the doctors we were seeing was that they not only diagnos but treat their patients.  I keep in contact with them via the phone, letting them know what is and isn't working.  We go back in March for another test and follow up. They call in prescriptions to our local pharmacy.  

You need to find a doctor that will help treat you.

[cathyst]

Well, we have been back from Vanderbilt for about two weeks.  I cannot honestly say that it was worth the trip or expense.  

My neuro. at the University of Miami dx'ed my with Autonomic lg. and sm. fiber neuropathy via the emg/nerve conduction test.  That is why I decided to go to Vanderbilt.  Well, they told me that that dx cannot be made with the emg/nerve conduction test.  Rather, they said that I have POTS.  This was news to me....and who do I believe?  They really give you the dx and spit you out.  I am once again, left to my own devices - which is pretty much researching online.  

They seem to think that I have overlapping issues, some symptoms might be from my mild case of diabetes and still something else with my central nervous system.

So, same ol' story...no treatment or cure and basically stay on my back.  I am so fed up.  This has been an almost five year battle to get help and hopefully treatment.

Is anyone else on here with POTS bedbound?  I do not have the fainting symptom, which is a plus. I am definitely not as sharp as I once was and see big deficits in that department, which is scary.  But I cannot stand or sit for more than approx fifteen minutes.  I am so ready to give up on doctors.

Thank you for letting me vent
Cathy

[AireScottie]

Is there anything that helps you in an emergency, like ice, salt, gatorade, soup, caffeine?  If so, make sure you pack it, and bring some for your testing.  After my latest tilt test (where my heart stopped), I hadn't thought to pack any of these things.  Luckily, I made it to the cafeteria full of Coke and salty fast food before I crashed again.  If you need a break in the middle of your testing, make sure you INSIST on it, unless it's something where they have to start all over again.  Don't worry if you sound like a *****; you're allowed to when you're that ill!  I'll be at Cleveland Clinic the same day you're at Vanderbilt, so I'll be sure to keep you in mind.

[laurab2818]

Hang in there. I know how you feel.  I felt the same way before I went to Cleveland.  It will be good to get a very thorough evaluation.

Laura

[cathyst]

One of my neuros said the best dr. in the world, regarding autonomic issues, is at the Mayo/MN....and he is a dr. at the Cleveland Clinic/FL.  Unfortunately, the Mayo/MN said they could not help me.

We are putting a down comforter, doubled up on the front seat and I am bringing down pillows and a micro fleece blanket.  The seat will, no doubt, be in the recline position the entire time.

I am really nervous about how I will tolerate the ride.  Hopefully, I won't regret it, but I decided to take two days instead of three.  The total trip is 14 hours.  I haven't been sleeping at night at all anymore.  I'm hoping. assuming that I won't get to sleep tonight, that I might get some sleep in the car - but I am a dreamer (no pun intended).  We have a Honda Odyssey handicap mini van, with only the third row seat in the back.  I will probably give that a try if the front seat doesn't work.  It will be hard not being able to prop my feet up - ugh!  I don't have the fainting problem, but I get VERY sick when sitting or standing too long.  The schedule they have for my tests is going to be really difficult too.  I'm dreading the entire trip.  We haven't left yet and already I cannot wait to get back to my own bed.

Thank you for your tips and encouragement!  I'll post when I have some news.

Cathy

[shannonkim]

The Mayo in Rochester has an great autonomic center let by some great docs, my favorite is Dr. Robert Fealeay in Nueurology. I beleive they call it an Autonomic Testing Lab. Please excuse by terrible typing. He has helped my a bit.
I would recommend him hightly because he takes enough time to get to the gist of the problem without looking up at the clock every few minumtes

[AireScottie]

Very best of luck!  I hope you get someone who really understands what's going on with you.  You deserve it!

Are you going to bring pillows and blankets to lie down in the back of the car?  I pass out if I sit for too long, so I either do that, or put my feet up on the dash in front of me.  Don't think I could do 14 hours though.  2-3 is my limit.  Breaking it up into 3 days sounds like a good idea.

[CHRISTYDRAKE]

The doctors did the same with my son, but also mainly blamed it all on anxiety.  We felt so much better(mentally) after going to Cleveland.  I wish we could have gone to Vanderbilt, only 5 hours from our home, but they don't treat children.  Cleveland is 9 hours.

Good luck.

[cathyst]

Thank you both for your comments.  My drs. down here basically gave my the name of my dx and sent me on my way.  All I know about it is what I have read on here and the internet.

I chose Vanderbilt, since it is the closest to us.  Fourteen hour car ride and I am not sure how I will be able to tolerate it.  We may break it in to three days.  My husband is going with me.  They have several test scheduled, over two days, along with dr. appts with two doctors.  I feel like I will at least have a better understanding of what lies ahead.

Thank you guys again!
Cathy

[CHRISTYDRAKE]

I think that is a good decision.  We are currently in Cleveland with our son for a follow up from October.  He is going to have the sweat test, capsule endoscopy and mri, plus bloodwork.  Just knowing there are doctors who know what is going on, they are sympathetic and wanting to help instead of dismissing you is a good feeling.

Good luck.
Christy

[halbashes]

I support your decision wholeheartedly!  Though I have to admit, if you had decided against Vanderbilt, I would have supported that as well.  I don't know a single Dysautonomia patient that doesn't need some level of control in their lives, and being able to choose your own treatment is a part of that.  I'm sure some of our other community members will agree.

While there is no guarantee that the specialists at Vanderbilt will be able to help you, I wouldn't at all see it as a waste of time.  I've read many of your posts this past year, and as you've said, you're very sick.  If there is some chance that Vanderbilt can help...  The worst that can happen is that they won't have anything of value to add to your current treatment, but honestly I've never met a doctor without an opinion.

I would recommend asking friends, and family to travel with you for moral support.  Also, Vanderbilt will likely be able to provide you with counseling services if you request them.  I'm sure their specialists understand the difficulty their patients have in accepting certain troubling diagnoses.

I will keep you in my thoughts and prayers.  I hope your upcoming appointment with Vanderbilt will offer you an improved treatment plan.

Preparing For A Visit To Vanderbilt Medical Center:
http://www.vanderbilthealth.com/main/11326