Where Will Pots Take You?

[lorrie]

A few recent posts got me to thinking about how far many of us have traveled to get answers to all our crazy symptoms and how many doctors we have sorted through to find one worth keeping.

The farthest doctor's appointment I have had is a four hour drive away. It was a true waste of time and very stressful. I have probably seen over 25 doctors and had hundreds of tests of various kinds. I have been hospitalized about 16 times over the past few years and poked and probed and humiliated...

It is enough to send you running and screaming the opposite direction of any medical person or building (if we could run and scream without passing out...lol)

Thankfully, I have now found a wonderful team of doctors only 1 1/2 hours away and feel like I am the most important patient they have. That is such a rare and fantastic feeling!! My wish is that each and every one of us will find that perfect fit with a knowledgeable doctor and be treated with the respect we deserve.

How far have you traveled? How many doctors have you "test drove" before finding that right one?

[pat57]

Well, a cardio sent me to a shrink who sent me to a neuro who sent me to an EP, and the process took 4 years. Distance half hour drive.

[bjt22]

I was very lucky. My family doctor sent me to a specialist right away and I received a diagnosis literally within a week of my showing up in an emergency room.

[Ernie]

Hi,

It took me 30 years and being treated as a nutcase and many other psychological garbage can diagnosis. I had to travel to the US to NIH to get the medical proof that I was physically sick. I had seen more than 60 doctors in 2 years without counting the ER doctors. I don't know how many times I was hospitalized and how many times I went to the ER by ambulance because I stopped counting after 10. I didn't have enough fingers!

I went to Dr Grubb which is 14 hours drive, Vanderbuilt which is 7 hours flight travel, NIH which is 10 hours drive, and many cities in Canada which are about 12 hours drive.

I am lucky now that I have found a researcher in my hometown to study my family. I don't have to travel far. That is good because I see him almost every week with different family members.

[Angelika_23]

hello,

I have been all over too. I have travelled to Wisconsin to see a Neurosurgeon for my chiari, I have been to Cleveland a couple of times, I have been to Toledo to see Dr Grubb, I have been to Vanderbilt.

Around home, I have been to at least three local hospitals and have seen countless specialists here. I have to say, my local people besides my cardio ep didn't do a lot for me. They all kept diagnosing me with depression and mental illness. I would love to send them all my test results from Vanderbilt and my office notes from Dr Grubb! Validation!

Angela

[ajw4790]

I had more luck once I moved for college in that city so that doesn't require much travel. I do hope to see Dr. Grubb as well, and that is about three hours away. My previous drs. are 1.5 hours away. I also had some symptoms etc. back in high school and of course got nowhere... that was like 8 hrs away in Atlanta.

[summer]

I had spent a year seeing a number of doctors who had no idea what POTS, or orthostatic intolerance was. I am a nurse, and was very confident that I knew that this was what was happening to me. I decided to stop getting stupid opinions (which were only adding to the confusion), and travel as far as neccessary to see someone who knew about dysautonomia. We drove a 14 hour drive and I got my diagnosis and treatment that is working. It was well worth the trip for me.

Summer

[lorrie]

Thanks for your responses. Seems like most of us have had a turn at "chasing our tails" trying to get to the bottom of our illnesses. I would love to find a way to educate EVERY doctor about dysautonomia.

[dizzygirl]

traveled to wisconsin to (took by bus 16 hours to get to milwaukee..drive time would have been 8-9hrs) get dx with chiari malforamtion..congenital cervical stenosis.vetebral artery issues..along with herniated disc and bone spurs... going to pittsburgh to hopefully begin treatment...

Initally traveled from NY to PA to get dx with dysautonomia..(2-6 hours travel time 1 way) then traveled to the cleveland clinic and toledo ohio... also have traveled to various dr's in pittsburgh pa.

kinda necessary if you want good comprehensive medical care to have to travel to be seen and hope that your dr will work with your local dr... or that you ans dr will work with you via phone email or whatever...

[lmbutare]

It took me about 2 years, 30 doctors, and a trip from NC to Mayo in MN twice for diagnosis (can't even remember how long the plane flights were). Way too long and too much money before I got any help at all. Believe it or not, I was put on a LOW SALT diet with a diuretic for 3 months b/c they thought I had Meniere's. So basically all the docs I saw before Mayo just kept making me worse. Not a fun process, as we all know.

[ladyt]

hey

had to travell all the way from europe too the usa to get diagnose... this was bach in 98,,=)

[Maxine]

At first I didn't have to travel far. Dr. Grubb is less then a mile away.

However, I have seen a neurosurgeon in Chicago several times, and had cervical spine surgery in Chicago (5-6 hour drive). I also went to Wisconsin for more followup with same NSG (add another hour to the 5/6 hour drive to Chicago).

I went to NY to see NSGs (10 hour drive), and to Cincinnati to see an orthopedic surgeon who I still see.

My EDS geneticist/specialist is from Cincinnati also (3 1/2) hour drive.

This past year I traveled to Baltimore Maryland for the EDS study with NIH/NIA----(8 hour drive).

I went to Mich. which is only 45 minute drive, and it's a good thing because those docs didn't work out.

However, all doctors I have traveled to were very good, and validated my health problems.

The only local doctor that is very good is Dr. Grubb.

My local neurologist is respectful, but has no idea of how EDS affects the spine, and cervical/cranial junction on some EDS patients. She has been pretty decent on understanding OI/POTS.

Maxine :0)