Hi Everyone

[cberau]

I'd just like to introduce myself, my name is Chris, I've been on the outside observing for a little bit and absorbing information on my way to finally getting a solid diagnosis. Last week I traveled to Chicago to see Dr. Barboi at Rush University, and ended up getting a very solid diagnosis of Hyper POTS, with possible mast cell degranulation. I was prior diagnosed with palmar/plantar hyperhidrosis and Raynaud's syndrome, along with anxiety and depression. I know I'm not anxious or depressed, maybe a little dysthymic because of all of this. Not sure if the palmar/plantar hyperhidrosis and Raynaud's are secondary to POTS or cooexisting, doesn't matter too much I don't think.

Dr. Barboi was 100% amazing, he seriously blew my mind, his staff works with ridiculous efficiency too. Much better than anything I've dealt with here in Arizona.

I'm a 22 year old male that just graduated college, with a degree in aviation (I was a professional helicopter and airplane pilot, until last week obviously, FAA medical cert is revoked because of this, so that's a $400,000.00 education down the drain), and now I'm trying to figure out what to do with my life. Losing my medical cert wasn't exactly a surprise or a shock to me, I had a feeling there was something very wrong with me. Doctors have taken me on large misadventures looking for neuroendocrine tumors and such, but 24 hour biochemical testing all came back normal. I'm sure my story is similar to a lot of other people here, except mine was pretty drawn out, lasting about 9 years progressively getting worse, but now I know what's wrong. I also apparently presented with some other odd nerve problems, slight right side muscle atrophy in face and arm, and my pinkies have highly impaired feeling or response, I can't remember the specifics of what I was told.

TTT was "highly profound" according to Dr. Barboi, sweat test had highly abnormal results, but I think all the other tests were somewhat normal. Dr. Barboi said I had some of the darkest purple legs and feet he'd ever seen during the TTT. And one of the coldest hands he's ever shook.

I might be moving back to Chicago soon (kind of grew up there, but originally from New Zealand) if I get a job I interviewed for with United Airlines last week, fingers crossed. Dr. Barboi begged me to keep in touch, whatever happens though. Sorry if my grammar is crap right now, I'm in a nasty brain fog episode, but I just wanted to introduce myself to y'all, feel free to ask any questions or share experience or advice with me.

Thanks

[ShakeyTheOwl]

Hi!

So sorry to hear lengthy process to diagnosis.

Two and half years here, with a scare in beginning of possible lymphoma.

Am glad you had good experience in Chicago, and hope something positive comes forth with your aviation cateer.

The raynaud and blood pooling seems to be something a lot of us have .

The sweat test for small fiber neuropathy, (qsart) also this neuropathy is type that many of us have too.

Tons of incredible information here and awesome people.

((Btw- my fiance moved here from Auckland, NZ. Three years ago. Kiwis!

Hope Chicago goes well for you))

[cberau]

Haha, we're a different bunch. I'm more Arizonan than Kiwi by now though I'd say. I'm also from the Auckland area, Clarks Beach/Waiau Pa

[jpjd59]

Welcome! It sounds like quite a journey you have been on already! I know that I have found a lot of helpful information (and support) from this site (my 24 year old daughter was diagnosed with POTS almost 2 years ago). I'm sure you will find this site to be useful too.

Hope you get good news about the job.

[ShakeyTheOwl]

Was just thinking, the saying "it's a curly one"

Would definitely apply to dysautonomia ...

[Katybug]

Welcome!

[bebe127]

Welcome and good luck with all your endeavors

[Chaos]

Welcome. Sorry you have a reason to be here though. Glad you finally got a good doc to work with.

Interesting that your pinkies have issues. Is that constant or intermittent?

At Rush how long was the TTT they did?

Hope they were able to suggest treatments that are beneficial to you.

[cberau]

They did an entire battery of autonomic testing, the TTT itself was about 25-30 I think, not too sure though. The entire appointment was 3.5 hours and dr barboi stayed at my side the entire time. I have a feeling the TTT got cut short because of excessive pulse and I was about to pass out. He was alarmed at the color of my legs and feet, actually asked permission to take pictures (and he's for sure seen a lot of POTS patients, he has to be one of the very best in the "industry") he said where the probe on my foot from the qsart was looked extremely strange during the TTT upright portion.

[cberau]

Halfway through the TTT I could see the pain on his face slightly when I think he was sure it was POTS. He knew that was the end of the my career, and you can tell he really deeply feels for his patients. Nothing fake about him at all.

[Chaos]

That's really great that you had a doc who was so professional and yet so concerned/caring. What a nice combo. Major bummer that it had to signal the end of your career and all that training though. Trying to remake a life after this diagnosis takes away what you "used to be" is a major challenge.

[looneymom]

Welcome to the forum Chris. It sounds like you have been on a journey for several years now. Did your symptoms start when you were a teenager or even before that? I'm curious to know because I have a son that was diagnosed with POTS when he was 11. His condition has also gotten worse and he has not responded well to the traditional POTS medications. So our cardiologist has decided to run the AAG panel and check the blood marker for AS. So sorry to hear about your career being cut short. However, a lot more research is being done and you might be able to get into some of the studies. Hang in there. Our cardiologist tells us it's going to be a long hall. Hopefully, doctors will find a cure for this thing so we can all get on with a normal life.

[seattle chris]

Sorry to hear about your issues. My symptoms have put in question my career prospects as well. Good luck with the United opportunity - I worked there for 6.5 years

[cberau]

My onset was probably about 11. I noticed the light headedness more in the beginning, but not as much now. Now it is just like a permanent hangover type feeling, incessant headache, nausea, extreme fatigue, inappropriate appetite, etc. There is also some paralysis and muscle atrophy progressively happening on my right side that has been found quite a few times, mostly in my face and extremities, and hyperreflexia. I had a couple of crazy illnesses, but I feel like they were after the onset of symptoms. It was a very gradual and insidious onset, with things really accelerating somewhere around 2010. The most odd thing I remember, is all of a sudden overnight sometime when I was 11 i got all of these skin allergies, like major contact dermatitis to some fragrances, colophonium (a preservative in antibiotic creams), formaldehyde resin, nickel, potassium dichromate, and a few other things. All those chemicals are in basically everything I come in contact with daily.

[kitt]

Welcome Chris,

Am sorry for your experience and the loss of your professional career. Ugh...Like so many here.

How did Dr. Barboi, (he sounds like a fine doctor) dx you as hyperadrenegic? Just curious.

Your long, drawn out illness being finally dx is awful, (though not unusual), and I'm sorry for your pain, but it's satisfying to have a dx, as difficult as it is.

Thank you for sharing.

Best,

K

[cberau]

He said symptoms, my extensive clinical history, physical presentation that day, and progression of blood pressure and pulse, extremely cold and sweaty extremities were more than enough for him to make a solid diagnosis without testing catecholamines supine vs orthostatic. Of note too, my resting pulse supine is somewhere between 45-55, sometimes as low as 38, yet by the 10 minute mark I was at 155, with narrowing pulse pressure, but rising mean arterial pressure. This guy said he knew it was hyperadrenergic just by me walking in the door and him shaking my hand. Also my most prominent symptoms are the headaches, extreme fatigue, nausea, not so much syncope unless I am doing some activity with my hands above my head like changing a light bulb. He suspected MCAD because of blotchy redness forming on my upper chest, and my sudden onset allergies to various chemicals. I brought a very very detailed history with me, and he commented that I was very good in describing the timeline of events, and I made it clear it was a gradual, insidious and increasingly progressive syndrome in my case. I also had documents from mayo over the past few years that really raised suspicion of hyperadrenergic pots, along with an endocrinologist at mayo suspecting hyperadrenergic pots.

[Relax86]

Welcome and good luck. Happy you found the right testing/Dr etc... Congrats on getting a diagnosis, as that seems to be so hard for some people. Sounds like your very driven in your education and career choice and I'm sure it will come together in spite of symptoms. I imagine you would make a fantastic teacher...

[Findinghope]

Chris,

I am sorry to hear your story but it touched my heart. I own an aircraft sales company. Your career in aviation does not have to be over. I still fly with someone else of course but I live aviation everyday. Look at some other options see if you can find a good fit there are many ways to stay in the field you just have to be a little creative :-) I won't say it is always easy but I've found ways to work around my illness. Most of the time I just deny it and pretend I am fine LOL......All kidding aside let me know if I can help in anyway. Have a super day!

[Lemons2lemonade]

There are a lot of bad places to be feeling faint and i imagine in control of a vehicle at 30,000 feet is not the best. I don't even like driving down the freeway! Since you know the ins and outs though, perhaps you could get an administrative job with the FAA?

[cberau]

Ehh maybe. Not a huge fan of bureaucrats though lol...

[cberau]

I got a minor in psychology, I'd rather pursue that than aviation honestly. I honestly have gotten really lukewarm on aviation since I started school, but that could just be the school I went to.