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Hi!! I'm New!!


AissaJ

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Hey im new here and mainly looking for some help with my symptoms. I was diagnosed with pulmonary stenosis and Noonan's syndrome when i was born. For those of you who dont know what those things are; Pulmonary Stenosis is a condition characterized by obstruction to blood flow from the right ventrical to the Pulmonary artery. This obstruction is caused by narrowing (stenosis) at one or more points from the right ventricle to the pulmonary artery. And Noonan syndrome is a genetic disorder that prevents normal development in various parts of the body. A person can be affected by Noonan syndrome in a wide variety of ways. These include unusual facial characteristics, short stature, heart defects, other physical problems and possible developmental delays. Which for me, i was affected with having a short stature(5'2) and heart defects(pulmonary stenosis). I was also deaf by the time i was a few months old and learned sign language, and because of the rollar coaster of Noonan syndrome, i was able to hear perfectly by the time i was 8 and didnt have to have hearing aids anymore. I also have poor eyesight and have to wear glasses/contacts. Because of having these problems, the doctors never really knew what was going on or how to fix these. So my mom had started doing organic and raw foods, which is why i live on a farm with cows, goats(goats milk is good for digestion), chickens, pigs, sheep(sold/butchered them) and we grow most of our veggies in the garden. When i started having fainting spells, dizziness, ect. when i was 15 the doctors said it was prolly just more side affects from the noonans syndrome, and several doctors and specialists later, one doc said it could be POTS, and they would have to run some tests (ugh!! More tests!!) but in the meantime to research it on our own and try some home remedies that might help my symptoms. So here i am, im not diagnosed with POTS yet, but i have all the symptoms plus more which could be from other stuff but idk. Any advice?? 

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Hi @AissaJ!  Welcome!  I don't have POTS diagnosis yet either.  I have preliminary POTS diagnosis.  I have neurological exam done (normal), holter monitor (awaiting results), EKG (normal).  Upcoming tests are echocardiogram and tilt table test.  I'm eager to have diagnosis over with!  I was misdiagnosed with psychiatric conditions for 13 years, so it has been a long time to figure it out.

If you're going to pursue POTS diagnosis, I suggest keeping detailed log of symptoms.  I use a heart rate monitor too.  I plan to start an exercise program right away after my tilt table test.

I live on a farm too!  We have goats - 2 wethers and a diary buck.  My dairy doe died last year.  We have chicken and small flock of sheep.  I love the sheep!  They're fun animals (and taste good too).  We have a big garden too, but it's doing poorly this year.  

 

 

 

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Hi AissaJ!  So glad you found Dinet!  There is just a wealth of information here, so have fun reading!  Just a couple of suggestions that helped my daughters (21 and almost 19) was electrolyte water (oldest drinks 2L of Smartwater and another liter of other fluids), florinef, extra salt (can you say ramen noodles!!) and knowing when to do things and when not.  Like, if the weather throws a kink in how you feel, make it a slow day.  One thing we've learned is not to push yourself too much.  It's ok to do things, don't get me wrong, just do it in moderation.  Know your body! : )  That's most important!!

When my youngest was really sick with vertigo, the only thing she was eating in abundance was soup.  After a while, we started noticing that some of the dizziness was getting better.  Didn't know why.  So, on with the soup, though.  Realized the one thing my oldest WASN'T eating was soup, so we started adding salt tablets (Thermotabs) to her diet (she's not a big fan of soup!).  It helped her some, but she's got some extensive spine issues right now (going in for a huge spinal fusion surgery end of July - about 11 vertebrae to be fused!)  so we'll see what we are left with after that.  Noonan's syndrome, heard of it, but didn't know much.  Thanks for the explanation!  I enjoy signing, although I'm a little rusty at the moment!  Some friends were deaf. 

Take care and don't hesitate to ask questions here.  Tons of knowledgeable people!!

p.s. we grow many of our own veges, too!  No animals, though!

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My cardiologist put me on limited ecwrcise and NO P.E because i had passed while running the mile once in 8th grade and they didnt know what it was. So i am fully awate of the dont push yourself and i love ramen its always made me feel better. 

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Hi AissaJ! Welcome. While I don't have something severe as Noonan's I was born with a bilateral cleft lip and palate which required 12 surgeries for repair and frequently interupted childhood. Also short in stature at 5' so hear you there! I have recently lost height due to chronic vertebral Osteomyolitis so maybe not even 5' anymore lol!  

Have been dealing with debilitating symptoms from Dysautonomia for 5 years now, sorry you are having trouble with it now. I can look back and see things from my childhood which I ignored seems that I Also have something autoimmune underlying (proposed by neurologist) that kicked things off 5 years ago following a sinus infection. That so far has been a dead end road as my autoimmune blood work leads in no specific direction. 

For advice I don't have much more to offer, just second the salt, fluids, & don't over do it. I found jotting down symptoms and measurements (bp, Hr, O2...) to be helpful in the beginning because I could better know my body and learn where my limitations were to a degree. Also was helpful for my Drs so they could get a more widespread picture than the 30 minute office visits. My Drs are very accommodating and we've worked together a couple years now, I hope you will eventually be able to find the right team of Drs. It is a test in patience with this... Often takes a while for diagnosis and then finding what works for you because it's a lot of trial and error.

BTW also a farm girl 5+ acres with horses 3, goats 5, chickens 32, rabbits 4, and of course 3 dogs lol! 

Wish you all the best and hope you find help and support here as I have.

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I also have chronic iron deficiency anemia managed by hematology by doing yearly iron infusions. I do notice I'm more symptomatic with low counts however is not responsible for all of my symptoms.

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