Getting Diagnosed

[Anoj]

I don't live near one of the major diagnostic centers (vanderbilt, cleveland, mayo), but I was lucky enough to have a cardiologist diagnose me with "dysautonomic syndrome." i suffered fainting spells and suddenly was unable to function or walk. he prescribed midodrine, florinef and zoloft, which i am on now. the combination seems to be the best i can get at the moment.

he doesn't know how to better help me and agreed that it would be best for me to see a specialist out of state. he also said that he couldn't differentiate the different kinds of "dysautonomic syndrome" for me but that whether it be POTS, NCS, etc., the result is still the same (fainting, lack of function, slow/fast heart, etc.) after researching, i am comfortable saying that i have some form of "dysautonomia" with varying symptoms. fainting, lightheaded, dizzy, fatigued, occasional tachycardia, but only right before a faint, not in general.

my question is, does it really matter whether i get a proper diagnosis at one of the specialty centers? what more info could they tell me, and what other treatments would i be able to get? my doctors are pretty much willing to give anything a try. for example, ritalin (which i couldn't tolerate). i guess i'm trying to gauge whether it would be worth a trip to go somewhere.

let me add that i can barely travel AT ALL. even a trip across town in a car can leave me bedridden for days/weeks. i have taken 3 two-hour trips in the past 15 months, and could barely get to my destination without fainting, then being completely fatigued for weeks afterward. i'm absolutely terrified to get on a plane!!! something about motion - particularly speed - is intolerable for me.

a lot of the terminology you guys are using on the board is frankly over my head. i just haven't had the testing that many of you have had done, but i feel like i belong here because this is what i have. i would love to hear your feedback. i am going for a checkup at the doc tomorrow, but i'm sure it will be a status quo type of meeting.

thank you.

[ramakentesh]

If you want answers or a specific diagnosis perhaps a visit to one of the major centres may be warranted, but most of the treatments you have suggested are commonly used for all the various forms of OI anyway and even within select diagnosis there are variable responses to medications.

[McBlonde]

That is AWESOME that you have a physician that is willing to work with you. Those are few and far between!

[DoozlyGirl]

Anoj,

Well, you've come ot the right place. Welcome!! In the beginning it is all overwhelming, but over time you'll learn what terms pertain to you.

Have you had a Tilt Table Test? Did he perform orthostatic vitals on you (BP and HR while you are laying, then sitting, then standing?) this is often a good thing to get helpful information quite easily. How did your cardiologist come up with your diagnosis? If he diagnosed you from your history of fainting, the tilt table test could prove to be helpful. There are multiple reasons why a person faints and some things work better, depending on what is going on. There are also many non-medication techniques that can be very helpful in tricking your body to stay upright. Blood could be pooling in your lower legs, and not reaching your brain, so your bodies circuit breaker pops and you faint. A goofy heart rhythm could trigger you to pass out. You could have low blood volume or a host of other reasons triggering you to faint.

I have BP and sweating issues and a diagnosis of autonomic neuropathy. Most of us start with hydration, salt, compression socks, and engaging muscles in the legs when we stand. We also have to accomodate for our issues. I have to sit in the shower. I cant bend over, so I use a rolling cart to garden, and rolling desk chair to dust. I get presyncope (all of your symptoms, but my BP is so high I don't actually pass out) and always walk around a grocery store with a cart to lean on. You will learn so much on this site and will soon find others with your same symptoms and issues.

Since you don't seem to have GI symptoms or sweating issues, then you may be able to start with a local Electrophysiologist (EP cardiologist who specializes in cardiac rhythms, HR and BP), and can perform the tilt table test at most any hospital. Where are you living? Maybe someone on the site knows of some one in your area. Once you get stablilized, then maybe you would be able to travel to a larger autonomic center.

Best wishes, Lyn

[AllAboutPeace]

Anoj,

I can relate to what you are saying about the car rides and the tips that Lyn mentioned have helped me a huge amount. I had symptoms (nausea, chest pain, shortness of breath, lightheaded) from even a 5-10 minute car ride and it would set me back for days. I discovered one day, by accident, that I was having lots of blood pooling in my legs when I'm sitting. I hadn't put my socks on yet and looked down at my feet to see that they were zombie purple. I almost always have my legs up when sitting because it reduces my symptoms and helps me to think (my IQ drops dramatically when my legs are down . I can now handle car rides without those symptoms because I always put my legs up (either in the back seat or tucked up in the front seat). So that, along with the salt and water has really helped me with travel. Those little modifications can help alot.

Like you, I am a long distance from specialists, but some days I would just love to be face to face with a medical professional who knows more about this than I do.

[Anoj]

thanks for the warm welcome. you've all pretty much confirmed what i've been thinking - that it's not worth risking my health to travel when i'm getting treated properly anyway. i would hate to get on a plane and freak out or be bedridden for the rest of the year!

i do feel lucky that i have a doctor who is somewhat knowledgeable and willing to work with me. i think i ruined my last visit with him by crying, however. i was upset and he seemed to brush me off as needing psychological help. but generally he has been good.

i can't seem to shake the weight gain from the SSRI i'm on. i used to be 145 (for yeaaars). now i'm 220. it's very upsetting. that's why i was crying. i think he thought it was about the fainting. oh dear.