Finally Saw A Dysautonomia Specialist!

[yummycarrots]

After two months of ongoing symptoms (OI, weak legs, nausea, fatigue) following a big fainting incident, I was finally able to see one of the few POTS specialists in my area.

I felt very much blamed for my symptoms-- there was a lot of clucking from the residential fellow that I obviously wasn't getting enough salt (though I've been drinking 3 liters of specialty hydration drink a day). I don't know how much salt is "enough" for me as a POTSy, that's why I was there!

I was told many times that I shouldn't worry about my POTS as I was both "young and healthy". This despite me having a daily log of my bp/heart rates and careful details of times I'm feeling bad. I almost wish I were more symptomatic today so that my illness couldn't be dismissed out of hand.

The only ray of hope I have is that I was invited to join a study on classic POTS. Hopefully that will allow me a little more insight over what is going on. Self-education seems to be the only good choice, here. (Both the fellow and Doc were very dismissive to learn I read online forums-- too bad, as I've found DINET to be so helpful and comforting!)

I know this grouchy feeling will pass eventually but right now I'm seething in it!

[Birdlady]

Unfortunately I can't tell you it gets any better... I went to a specialist as well and was immediately accused of lying about my HR's. Why would I do that? Thankfully though my TTT showed them exactly what I was describing so it shut them up.

I don't understand why doctors treat us so poorly. I'm sorry for what you went through and I hope that they can help you to start feeling better. Today is a bad day for me as well.

[houswoea]

Goodness, it seems so silly that they are just as bad as the ones who don't know! Silly doctors, it's your job!

I'm sorry they weren't helpful for you. I believe you!

[skiberthoud]

I see why you are grouchy! It's like betrayal when someone who is supposed to understand you dismisses you. Sorry you had that experience. Curious...is this specialist at BI? Hopefully tomorrow is a better day!

[yummycarrots]

The funny this is that they had my TTT results, which show a clear indication of POTS. I just thought it was so bizarre the way the conversation ran "you are young and healthy and you'll be fine" when the Doc had called me in due to terrible TTT results. Argh.

I am feeling better about the situation now; I do have a wonderful PCP who has been in my corner from day 1 and has been learning about POTS along with me. Got to count my blessings!

[PotsMom]

It's wonderful that you have a PCP who has taken an interest and is willing to learn. Frankly I'm more and more coming to the conclusion that those types of doctors are in fact the best ones to work with anyway. Even the leading "expert" doctors who treat dysautonomia are experimenting as well as they don't have the answers either as these conditions are still too poorly understood. I sometimes think, too, that the doctors with a lot of dysautonomia experience tire of it a bit as I am sure it is very discouraging after a while as it is so hard to treat, especially the severe cases. I really think that a PCP who takes an interest in a dysautonomia patient, is willing to learn, and is willing to work with you long-term to find various pieces that help you feel better is the best alternative overall.

[dianne.fraser]

The first dysautonomia doctor I saw told me that I had already maximised my functioning (obviously) because I was still working and I wasn't on medication. I was just barely functioning, crawling to work on my hands and knees and facing the loss of my job and my home. I had exacerbated my illness flying inter-state to see him, and he left me in absolute despair. He didn't give me even the most basic information about how to improve my quality of life - I have no thirst, and I'd always had poor fluid intake. He could have changed my life just by telling me to drink more, but he didn't.

I realised later that he had an interest in one specific type of dysautonomia (which I don't have) - he wasn't really delivering care, so much as recruiting for his next research project.

Specialists (even dysautonomia specialists) are not created equal.

I agree with you PotsMom, having a good GP who cares and takes an interest is absolutely critical. Every time I see my GP, she reminds me that she doesn't know much about dysautonomia, she's just having to manage me intuitively. Its working well so far, and I'm really grateful for her care.

[toddm1960]

I'm going to sound like a broken record, but your PCP is worth their weight in gold, these doctors are hard to find. Build your team around this person, and don't settle for any doctor that treats you that way again. I do agree with PotsMom that since these doctors can't "cure" POTS they tire of not having answers and it shows in the way they respond to us. Good luck, I hope you feel better and let your PCP know what a great job they are doing for you.

[cnm1]

Hi

I noticed you location is Cambridge, Ma. My daughter is moving to Cambridge this week. Who was the POTs specialist ? who is your primary care doc? Thank you for any info. You could PM me

Louise

The funny this is that they had my TTT results, which show a clear indication of POTS. I just thought it was so bizarre the way the conversation ran "you are young and healthy and you'll be fine" when the Doc had called me in due to terrible TTT results. Argh.

I am feeling better about the situation now; I do have a wonderful PCP who has been in my corner from day 1 and has been learning about POTS along with me. Got to count my blessings!

[dsdmom]

Sorry to hear about your experience but I'm also not surprised, if indeed you went to Beth Israel. I had a horrendous experience there myself and won't go back. My pcp was so angry that I had to stop her from picking up the phone to yell at them! She's had other patients go there with similar results. They tout themselves as experts but personally I do not think they are - or at least they are very closed minded.

Anyway, after 4 years of this and more drs than I can count - I am onto my 3rd PCP who I realize is worth her weight in gold! Glad you have found a good one, too.

[emadden514]

Hi Fictitious,

I'm sorry you had a frustrating experience. I am finally getting into the 1 guy in our area in December. BIDMC? I'm wondering what to expect. I live in NH, but all of my specialists are there as I have other health problems as well. I've heard mixed things. Not many docs in our area deal with this though. There's one more in Worcester, but that's about it. Did you have to wait a long time to get in? Hopefully the study will help. Take care.

Elizabeth

[dsdmom]

Elizabeth,

Personally I think you'll be disappointed @ BIDMC but if you need testing at least you can get that done. Unfortunately there aren't a ton of choices, but I also see Novak in Worcester. The problem w/ him is that his office is IMPOSSIBLE to get a hold of in between appointments and i haven't even been able to get refills through them at times. They also have canceled appointments on me more times than I can count. So there really isn't a great solution. Although I have started seeing a cardiologist @ Newton-Wellesley at the suggestion of my pcp. He is not a dys specialist but treats several patients. He likes me to keep seeing a neurologist as well since they do see things differently and do things differently.

Anyway, good luck @ BI. They think highly of themselves over there - I just wish I could as well!

[emadden514]

Dsdmom,

Thanks for the info. I have a wonderful GI at BIDMC. I like her a lot. She's the one suggesting a lot of other specialists. I see an EP from there as well and like him too. I've only seen the EP once but I've had no problem contacting them to help with my meds. I take Atenolol and just started Midodrine which have both been helpful. I actually saw him in the Ayer, MA office so I didn't have to wait another month. My Rheumy leaves something to be desired but I don't have to see him much and I will be seeing 2 more new specialists, one next week (Endocrinologist) and one mid-Sept (Hematologist). I'm hoping we can find the cause before I have to see the other one in December. (It sounds like we may all be discussing the same.) I've had the TTT done (in NH) by my request and had Tachycardia and Syncope. They are finally labeling it POTS. For the most part now I have no faith in new doctors until they prove themselves and don't get my hopes up. I also have a wonderful, supportive PCP. She has never questioned whether or not it's in my head. I have a really good opthamologist as well. They are both up here in Manchester, NH. It's so hard to get someone good that knows what they are doing and will listen. I feel badly for everyone that goes through the revolving door of doctors regardless of their condition. Thank you.

Elizabeth

[jimells]

Fictitious,

I grew up in Derry. I don't go there anymore - it's a bit crowded for me...

You have every reason to be grouchy. The medical industry in this country is completely dysfunctional. It occurs to me that when someone with a serious chronic illness actually gets better, it's an accident!

I tried to get help at UMass Worcester. It's likely the neuro I saw once might have actually helped me, but the institution is absolutely impossible to deal with. After a year I am still fighting to get charity care to cover all the bill. I needed my records, it took a month to get them, and they came with a $20 invoice from a company I never heard of (I threw it away. If they want to sue me, they'll have to take a number!)

I agree with the other folks that having a good PCP is absolutely critical. Since their main purpose seems to be to act as a gatekeeper, if they keep slamming the gate closed, there's not much point. When a person has a PCP who actually believes the patient is sick, AND admits they don't know everything, AND is willing to do some research, AND is actually trying to help the patient, well, you've struck gold.

[cnm1]

I wish I was surprise by this - but it is so common. Despite having the great Cleveland Clinic and University Hospitals 10 min from our house; we had to go to NY for help. That doc referred us to Grubb. When I finally convinced a local cardiologist to do a TTT (letter from MD in NY); she basically flat lined in 10 min. THe Docs response was - we thought that would happen!!! WHen I suggested starting some meds (florinef), she asked if we wanted to wait and see if Rachel improved on her own At that point , Rachel had been homebound for 2 years and using a wheelchair!!!!!!!!!!!!!!!!ARGHHHHHHHH

I think I will just pay for Rachel to fly back and see Grubb/Bev once a year if we have trouble finding a Boston MD to refill her rxs.

Louise