Newbie...Hi! Late introduction...

[Don]

Hi all.  I'm Don.  I'm in the new diagnosis phase and still learning a lot about dysautonomia.  You all are schooling me and I'm trying to keep up.  I saw my new neurologist for the first time about 2 months ago.  I was diagnosed with autonomic neuropathy on the first visit.  I have many symptoms.  Some of which are shared by users of this forum from what I've read.  I don't feel so alone.  I have been seeking a diagnosis since about 2009.  I have seen many doctors over the years.  Some of whom have not taken me seriously and dismissed me.  I have bipolar disorder so some doctors see my psychiatric diagnosis and think they have it figured out before even meeting me.  I'm a veteran and formerly saw the VA.  With all my symptoms, and there are many, they didn't take me seriously so after years of bouncing around from specialist to specialist, I sought care elsewhere in the private sector.  That's where, on the first visit, I was diagnosed with autonomic dysfunction and immediately referred to Mayo in FL.  I'm very much looking forward to my appointment.  I am a little anxious about what they are going to do to me because my symptoms are broad.  So I'll just have to wait and see.  

[KiminOrlando]

Hi Don. Do you know who you are going to see at Mayo? I saw a neuro up there that was pretty good and is published on dysautonomia. I can't remember his name right now. Brain fog.... I am sure you know how it is.

I hope you get a good one at Mayo. I'll keep my fingers crossed for you.

Kim 

P. S. The doctor's name was William Cheshire. I had to look it up. I hope you get him, but I am sure there are other good docs up there too.

Edited April 24, 2017 by KiminOrlando
I remembered the doctor's name!

[Don]

Hi Kim.  I am seeing Dr. Cheshire.  I'm in the process of collecting all of my records from previous specialists to bring to him.  The only problem is some of them are 5-6 years old so Mayo may want to repeat exams.  I am excited about seeing Mayo but at the same time I'm nervous because I don't know what to expect.  My referring neurologist wanted a TTT, Qsart, and valsalva I believe.  But I have such a wide range of symptoms, I'm unsure what else they are going to do.  

[KiminOrlando]

Excellent! You are in good hands. You are right, he will probably want new tests to see if your condition has worsened. He ordered a bunch of tests for me and had me stand for 10 minutes in their endocrine lab so they could check norepinephrine levels. I'm convinced he didn't do it in his lab because he knew that I was going to pass out and he didn't want to have to fill out the paperwork, so he has a sense of humor. The people in the endocrine lab were running around calling a code because people don't typically have no pulse or BP with endocrine issues. I woke up pretty quickly and they cxld the code, but he just kind of smirked when I told him. I am convinced he did it to endocrine for fun and he knew that I was going to be just fine so there was no danger. He just needed to know how long it would take me to pass out. When I left the endocrine lab, they were looking for the 'incident' forms. I'm sure they have gotten wise to this trick and put a stop to it by now since it has been 11 years.

I was never so glad to pass out with witnesses that finally mattered. Before then, everything was 'all in my head'. He unlocked it for me and started me on the path to treatment. It sounds like he is going to be your managing physician up there, so you are lucky. He was just a consulting physician on my case because I went in as a Rheumatology case, so my managing physician overruled him and I didn't get the medications he recommended. 

Evidently, he is nationally recognized for dysautonomia.... and a bit of a prankster. ?

Keep us posted.

Kim 

[Don]

I'm really anxious about going.  I'm ready though.  The VA neuro are the ones who dismissed me.  They didn't even test me.  I came to them with multiple complex conditions and they basically said it was all in my head, even though I had physical evidence from prior exams with providers outside the VA system.  I don't see them anymore.  The only reason I go to the VA is for my disability claim issues.  I am a military retiree with private insurance so I can go where I wish.  I went to a well respected neurology/neurosurgery group at a large teaching hospital in the city in which I live.  Evidently my neuro thinks I have something going on as I was diagnosed with autonomic neuropathy on the first visit and hence referred to Mayo.  So I'm trying to think positive.  If my doctor didn't think I had a case, she would have dismissed me like the VA.  But she didn't.  I'm hoping Dr. Cheshire can give me further information.  From what you say, it sounds like it's going to be a worthwhile visit.  

[KiminOrlando]

I know what you mean. I got to the point I dreaded going to the doctor because they just kept telling me that my symptoms were my fault and I could either choose to change it or not. I actually passed out in one doctor's office and his medical plan for me was for me to get on a treadmill more. I said, "but I can't stay conscious." He just looked at me blankly. I think the VA is of the persuasion that dysautonomia is a psychological condition, as was social security- now THAT was a battle. 

Dr. Cheshire attends dysautonomia conferences and is part of a national network of doctors who work to get this illness recognized by more medical professionals. He does a lot of work with Chiari and dysautonomia, which is what he found with me. It is a rare brain abnormality, I won't go in to it. 

I know what you mean by being ready for answers. Nobody ever wants anything to be wrong, but when you already KNOW something is wrong, you are ready to get a game plan so you can start fighting. I think you are very close to that point. Once they find some meds that work for you, life will get better. I'm still not like a healthy person, but my life is soooo much better than it was.

You are lucky you had other options than the VA. There are people on here who don't. 

I know you are reading a lot on this site about increasing sodium and fluids and diet changes. Be careful about doing that before Mayo. It could alter your test slightly, but enough that it could change the outcome. They need to know your real baseline. 

If you have a good neuro and you are in Central Florida, maybe you would be willing to share her name. I haven't found much help in Orlando. I just got misdiagnosed by a Pulmonologist here. I shouldn't be surprised any more, but I can't help it. I guess my expectations are just too high.

Kim

[Don]

I am afraid that the medicine I take will alter the results of the exam.  I take Lithium, which is a salt, for bipolar disorder.  It's not something I can skip out on.  If I skip doses of medicine, it can be dangerous for me and I could be hospitalized.  If I don't take my metoprolol my HR could go <100.  So I'm not sure what Dr. Cheshire is going to want me to do.  

[BuffRockChick]

Interesting!  Has lithium changed your POTS symptoms?  New research published in 2016 shows low-dose lithium increase vasorelaxation. I doubt lithium would mask POTS symptoms - and there's possibility it could make them worse.

Definitely talk over your concern with your doctor in advance so you don't need to be anxious about discomfort or inaccurate test results. ((Hug))

[Don]

I take 900mg of Li per day.  My blood levels are normal.  I used to take 1350mg a day, but I got Lithium toxicity because I got overheated in Disney World.  Neurologist was concerned I wasn't sweating.  I became dehydrated.  Left DW on Sunday. Had blood levels (routine) on Monday.  I got a phone call Monday night saying my levels were 2.2.  Which could be fatal and lead to more nerve damage.  People do die from levels that high.  I showed no symptoms of toxicity.  Anyway, I ended up in the ER for several hours getting IV fluids to flush the Li from my system.  They released me that evening and told me I was extremely lucky!  Had I not got that phone call at 8pm Sunday night, I take my night meds at 9p, I could have taken my night meds and elevated my levels to an even higher fatal level without ever having known.  So after this scare, my psychiatrist lowered my Lithium dose.  I take another mood stabilizer called Lamictal which actually doubles as an anti-convulsant used to treat seizures. So between those two medications, I have been stable for quite some time.  

To get to your question, I'm not sure how POTS is diagnosed.  I know that without my metoprolol my blood pressure and HR go way up.  Tachycardia goes into the 100's.  Before I got put on a beta blocker, I had an incidence in the doctors office where my blood pressure dropped ~40 mm/hg sitting to standing.  Also my HR increases by about 15-20 bpm upon standing.  But I have other symptoms you guys  with POTS aren't describing or not sharing.  Some of them are rather embarrassing.  

[Don]

This is the synopsis I'm taking to Mayo.  If this is an autonomic neuropathy, it has been untreated for 8 yrs.  Until recently, no doctor has taken this seriously.  The VA completely ignored me and said it was all in my head.  It's hard to argue with physical evidence from multiple exams.  But they did.  

 

Enuresis

Overactive Bladder / Frequency / Urgency / Overflow incontinence (diagnosed by urology 2009-2011)

IBS D&C / bowel incontinence ( gastroenterology)

Colonoscopy and Endoscopy, 2011

Peripheral Neuropathy diagnosis 2011

Dysphagia / Nausea / Early Fullness / Loss of Appetite / Bloating / Heartburn (2nd Endoscopy, 2016)

Hypertension / Tachycardia / Chest pain / Tremors / Tinnitus

Asthma / Past history of Nocturnal Hypoxia (Remission)

Orthostatic Intolerance

2 Episodes of Syncope

Hypothyroidism/Hyperthyroidism (Remission, 2015?)

Hot/cold intolerance

Joint Pain (hips, knees, burning sensation in feet when standing or walking for excessive periods. In the past, I've used a cane to take the pressure off my legs)

Tingling/Numbness in fingertips

Exercise intolerance – feeling of intense chest pain and shortness of breath

Periodic times where I stop breathing (almost like I’m unconsciously holding my breath…lasts for about 15-20 seconds) Causes shortness of breath and rapid breathing

I'm hoping Mayo will listen.  

 

Mods, sorry for the double post.  I couldn't figure out how to combine the two after submitting.  

[StayAtHomeMom]

Just wanted to say welcome, and congrats on a diagnosis. I got lucky of just a year and a half before I got my diagnosis. A lot of people on here took a lot longer. Try not to be nervous about your testing, the more data they collect the better answer they can give. And I believe an answer, any answer (as long as it is correct), is better than not knowing. Good luck on your tests.

[BuffRockChick]

Oh gosh, I see your concern!  Lamictal is a scary med to go off of cold turkey and then the risks of being unmedicated while tirtrating back up to your dose, y'know, so you don't die from it.....

I was [mis]diagnosed with bipolar disorder - and a whole bunch of other psych conditions.  Wading through all that and it's turning out to be ADHD and POTS.  POT diagnosis is preliminary, still waiting for confirmation.  I had atypical mood symptoms and atypical response to medication.  Seroquel was HORRIBLE for my POTS symptoms.  I was completely disabled, spent most of the time lying down.  I was experiencing presyncope just sitting up and would collapse almost every time I stood up.  Also been on lithium, lamictal, depakote, abilify, klonopin, Ativan, citalopram, Prozac, Paxil... you name it.  Uggh, I lost so many years, dollars, and memories to that misdiagnosis.  I've no memory of my son's toddler through Kindergarten years, I was not advised that the medications had amnestic effects.  Too bad the statue of limitations for malpractice is already passed.  

I feel for you trying to manage POTS and pysch meds.  That's a rough deal.  Hang in there!  I hope you get some answers soon!

[Don]

I know all those meds well.  I've been on every single one of them and probably a dozen more.  I'm actually allergic to abilify.  It made me want to tear my skin off.  Itch isn't the word for it.  I missed out on a lot of memories too.  No recollection of certain time periods.  Depakote caused ataxia for me.  One doctor hypothesized that my neuropathy could be iatrogenic (stemming from medical treatment).  If this is true then the drugs that are keeping me well could potentially...well.  I  won't go there.  

[Moiraine]

Welcome. I'm new here too, but not new to dysautonomia. I've had it all of my life. It took me thirty five, almost thirty years to be properly diagnosed. It's not unusual for a long delay. I really hope that one day that will not be the case. Good luck with your appointment.