Jump to content

POTS/NCS since a small child


Wufflebear
 Share

Recommended Posts

I have had this since I was five at least. How many of you out there are like me?? My medical and story are at http://whackercat.tripod.com/id7.html .

I would be interested to know how many people are like me. :) Is it genetic?? From what I have read it seems like it can be. But I am still learning about it. I was undiagnosed until 2002 (at 31 years old).

Link to comment
Share on other sites

Thank you all for responding. It was horrible as a kid and to be thru all that medical stuff to basically no avail. Man what a emotional knot it is to unravel. (-; I am glad I am not alone! No one in my family has anything like it either... :P

Is there a test they can do to tell you it is genetic??

Link to comment
Share on other sites

Hi,

You can ask to be tested for the 3 genetic mutations they have found. Otherwise your relatives have to be tested to find out if any of them have the disorder. You can always check around in you extended family to see if anyone has similar symptoms has yours.

Link to comment
Share on other sites

Do you remember what the name of the test is or what genetic mutations they are looking for? I live in the sticks and If they dont know which test to do, I may need to tell them.

I left a vm for the doc.... E Gads! I am so nervous!!!!! Wouldn't it be ahoot to finally find a REAL cause?!

Link to comment
Share on other sites

Hi,

I have limited knowledge in the medical field but I think they have to test you for each of the 3 different mutations. One that is well know is the NET (Norepinephrine Transporter), another is the familial dysautonomia which is usually people of Jewish descent and the third I can't remember what it is but I know it was discovered at Vanderbilt.

I am not totally sure but it might be chromosome 9 and 13 and another one.

Genetic mutation is the most solid medical cause. No doctor can tell you that you have conversion disorder or Munchaussen after that.

Link to comment
Share on other sites

today my favorite patient, 12 year old boy, was diagnosed with POTS, we are all very happy as I work at a major university and this child is a joy to everyone. His entire family is delightful. I am an end tech and have witness his episodes many times. He can actually turn his head a certain way and pass out. He and his mom describe the floor coverings in their home because of how often he falls to the floor. Whenever I see him at the hospital he is wheelchair bound. I have seen his NCS events and his events involving major brainwave changes on monitor. The family always brings the staff treats and we appreciate them but he gives us so much joy, we should give him the treats. I realize that this is just the begining of a long hard road for him, but today I'm so thankful that he finally will have the recognition that he deserves. I will be informing his mom of the discovery of this website. I hope that he will get the help he needs to inable him to live somewhat of a normal life, like go to school and interact with children. As now he is somewhat limited to having other students assigned to assist him. He is really funny and if the physcians magage this well he'll be able to enjoy middle school. He suffers a lot of anxiety and it weighs heavy on my mind. It is interesting to me how well he has been describing his symptoms and we're just catching on. thanks, lovethatkid

Link to comment
Share on other sites

Hmichel.. wow! welcome to our group!.. I read your story.. and some of it is like you crawled in side my head!! you wrote it very well.. I'm glad that you finally have a DX..

I too have had pots since forever.. but didnt get DX until I was 20.

I wish you well :D

lovethatkid.. I too am glad that this young boy was able to get a dx.. maybe now they can find something that will help him feel better...

god bless you both!

Linda

Link to comment
Share on other sites

My son had his first symptoms at age 8, 3rd grade. I have had mild symptoms all my life - my mom used to explain it by saying that we had low blood pressure. but it never seriously interfered with my life or my mom's, other than not being able to stand in place for any period of time - eg, could not be in the choir, had to sit down in church etc. We are going to see Dr. Low at Mayo next week and interested to see if he will order any genetic tests.

Link to comment
Share on other sites

Thank you guys again...and thank you dizzygirl for reading my page. It is so wonderful to have found this site and soooooo wonderful not to feel isolated with this.

momdi- My symptoms are kind of like that now...milder. Except some days.....(-; Let us know how the visit goes! I really think I should find a good doc and get looked at again properly but I am so far out in the sticks!

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

 Share

×
×
  • Create New...