Ohio

[briarrose]

How many people with POTS are from Ohio or have visited there?

I live in Oregon, but it's ironic that I was born in Ohio, vacationed there many summers as a kid and get my medical treatment there with Dr. Grubb.

Steph

[scamelo]

Hi

I've lived in NJ since 1978, but started symptoms in August while on Vacation in Ohio. I find it ironic that there seems to be a big Ohio Connection. I was also diagnosed at CCF in Cleveland, because no one around here could figure out what was wrong with me.

Silvia

[Kimberley]

Hello, I 'm from cleveland also. I go to the Cleveland Clinic. I see Dr. Fouad and Dr. Stillman.

[roelse]

I live a little over an hour south of Cleveland. I was diagnosed at CCF by Fouad and also have Stillman as a doctor.

[scamelo]

Who is Dr. Stillman? Is he/she at the Cleveland clinic. What kind of Dr. is he/she?

silvia

[Jackie]

Another one who lives in Ohio! Boy, wonder if there is a connection there!

[Kimberley]

Hello, Dr. Stillman is a Neroloigist and Dr. Fouad is a Cardilogist. Sorry about that.

Kimberley

[Michelle Sawicki]

I have more people in the Meet Others Program from Ohio than any other state. I'm not sure if it is because there are more doctors in Ohio that are familiar with dysautonomia, or if there is some other reason.

The overwhelming majority of DINET members are on the East side of the US. If you slice the US down the middle, there are VERY few patients on the west side. However, there are also very few doctors in the western part of the US.

Michelle

[Michelle Sawicki]

Ok...you got me curious...here are the stats from the Meet Others Program as of today:

Alabama - 3

Arizona - 3

Arkansas - 2

California - 9

Colorado - 4

Connecticut - 1

Delaware - 1

Florida - 12

Georgia - 5

Illinois - 15

Indiana - 3

Iowa - 3

Kansas - 3

Kentucky - 4

Maine - 2

Maryland/DC - 11

Massachusetts - 5

Michigan - 15

Minnesota - 7

Mississippi - 1

Missouri - 4

Montana - 1

New Jersey - 7

New York - 20

North Carolina - 18

North Dakota - 1

Ohio - 36

Oklahoma - 1

Oregon - 4

Pennsylvania - 13

South Carolina - 6

South Dakota - 2

Tennessee - 4

Texas - 17

Vermont - 1

Virginia - 13

Washington - 2

West Virginia - 4

Wisconsin - 12

Wyoming - 1

Other Countries:

Australia - 4

Canada - 11

Germany - 1

Italy - 2

New Zealand - 2

Norway - 1

United Kingdom - 11

Interesting stats...maybe I will include them in the next newsletter.

Michelle

[Marg]

Hey Michelle,

Is that Maryland/DC thing a new state?

Margaret

[Vettprsn]

I am from Ohio alos...I live close to Dayton which is in the South West of the state. There are alot of people that live in Ohio or has lived in Ohio that has these disorders. We have always joked about it being the water around Ohio. The people that live up North are by the water and us down South have the Ohio River.

I have always wondered about it.

Like Michelle said it could be the Doctors here in Ohio know more about it. We have Cleveland Clinic and also Dr. Grubb.

The best I can tell the people that don't live in Ohio is to not let anyone they know or love come to Ohio....LOL..

Vickie

[seaboardbc]

I was born in Cleveland and grew up in Columbus. I live in Minneapolis now. So, do you think there's some Ohio connection. I'm not ruling anything out at this point.

Bren

[Jackie]

Maybe this is crazy, but I'm not ruling anything out at this point, but think of this...in Ohio, at least somewhat near where I live, we have Davis Bessie Nuclear Power Plant (this is about midway between where I live and Cedar Point (Sandusky, Ohio). Is there a radiation link? How many states with the most people who are diagnosed have nuclear power plants? (We have that and the poluted lakes though!) Also, we have a lot of oil refineries. Food for thought. My sister was diagnosed with MS and said there are certain areas of the county and world actually where there is a higher incidence of MS (like pockets) and I think Ohio is one for that too. I think that is strange.

[carlacat]

I live in West Virginia but I live on the Ohio border. Two minute drive and I'm in Ohio plus I go to Clevelnd Clinic also Dr. Fouad. Ohio and West Virginia is loaded with chemical plants. There is Dupont and GE down the road and five other plants I can think of right off up the road. There is diffenently something in the air.

Carlacat

[Jackie]

Also, think about this. Those numbers are the people who registered here. What about all the people who have these problems and haven't found us? I can count up to 9 people in my family with symptoms some diagnosed and treated and some with symptoms but not causing enough problems to go further with diagnosis yet (mostly passing out and they are younger....wonder what will happen when they get older?). The numbers are much higher than we even know (and of the 9 that doesn't include 3 others - 1 with MS and 1 with fibromyalgia and 1 with chronic fatigue...similar problems there...different diagnoses.)

[bjedland]

I am from north dakota but wasnt diagnosed until i was sent to the mayo clinic in rochester minnesota....Dr Low is my neurologist ....he was and is incredible.....

[bjedland]

I am from north dakota but wasnt diagnosed until i was sent to the mayo clinic in rochester minnesota....Dr Low is my neurologist ....he was and is incredible.....

[briarrose]

Jackie

Good point about the nuclear and chemical components. I agree with you. In fact I was thinking of all the oil wells that have contaminated the well water.

There are at least 3 other people in my family with dysautonomia. My mom was just diagnosed last week and she was raised in Ohio.

Steph

[dizzy]

Spent most of my life in southern Ohio - not far from a uranium enrichment plant. Most of my family has POTS symptoms too - through my fathers side.

[briarrose]

I feel like I should be in an Erin Brokovich movie or Nancy Drew

[seaboardbc]

I'm not doubting anything that isbeing said here, but how do we explain why POTS seems to affect more females than males?

Also, I still think that somehow excessive exposure to Thimerosal could tie into the equation. Even today in my Chem class my professor talked about how mercury can cause neurological damage.

Any thoughts?

Bren

[briarrose]

I understand that more women are recognized now then men, but that wasn't the case 100 years ago. More men were recognized and the same illness was called soldier's heart.

Ohio's pollution problems

http://www.theoec.org/pubs_airenerg.html

http://www.ewg.org/pub/home/reports/brainf.../plants/OH.html

[Jackie]

Interesting point about mercury. When I had my first full blown episode of heart racing and sweating, etc. for about 6 weeks a couple years ago after taking 1 dose of steroids for an allergic reaction, I managed to make my way to a cardiologist in my area named Dr. Roberts (in Toledo, Ohio) who is a cardiologist but also takes kind of a nontraditional approach and utilizes therapies most regular cardiologists do not (for example, some procedure that cleans the blood...for the life of me I can't think of the name right now).

In any event, he did suggest mercury toxicity. I never did get to follow that lead up so thanks for bringing that back to my mind. This might be significant because I have many many dental fillings and even think I swallowed part, most, or all of one that came out of a bad tooth one time before I realized anything was wrong with my tooth and went to the dentist. Maybe this is part of the puzzle? This was in my late 20s around the time I started experiencing intermittent very short spells of dizziness that I attributed to sinuses.

Also, I can remember the days of the mercury thermometers before everything went digital and like kids do, I can remember at least one occasion where the thermometer was dropped and broken and my sister and I played with the mercury on the tile kitchen floor....I don't recall if we touched it actually or just used something to push it around since it balls up and rolls, etc. but think of how dangerous that could have been to play with? I think I read somewhere there are fumes that come off of it and they are toxic too. I don't know as people knew the hazards of mercury back then (i.e. my parents) or maybe they just never knew it had happened I'm sure (as we cleaned it up...it sure was hard to clean up though). Incidentally, this sister has MS now.

Somebody said something about Nancy Drew...that's what I feel like we need to be....detectives!

Thank God we have each other to share with. I'm learning so much and it is all helpful.

[justme]

We had heard Dr. Low's name mentioned alot when we were at Mayo. I wish my wife would have got him. I believe her neurologist was Dr. Feeley. He did a good job, but sounds like Dr. Low is the expert on POTS.

[Guest Julia]

I'm in Toledo Ohio----about a mile from good old Dr. Grubb. There's a lot of MS in the area also. I have always wondered if there is any connection. My best friend died just over a year ago of the worst form of MS I ever saw. She found out in 1995 and was gone by Oct. of 2002 at age 40.

She lived about a half mile from DUPONT in west Toledo. I often thought the environment needs to be looked into as a possible link to neurological illnesses and disorders.

Julie