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Big Update-Dr Visits-Tt, Blood Test, Etc..


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Hi everyone,

I've been MIA for awhile so I wanted to do an update on some test and dr. visits I've had. Hard to know where to begin.

I have a dream team of Doctors now, but I'm moving very soon will have to find a new team soon :( but worth it because it'll be a 1st floor no stairs :)

1. Immunologist/Allergist- Old but very smart- testing me for allergies, so far no food allergies at all not even gluten. Is testing me for environmental allergies this week. Has done the most blood testing out of all the doctors and so far it came back that I have low IgG subclass 1 and 3. I looked it up and that means I'm prone to lung infection type of things. Also my CD8 was high which means my immune system over reacts. I still have to discuss it further with him and maybe do more testing. Maybe Mast Cell testing..

2. Endocronologist- Thyroid normal, says she can't do testing for adrenals because I'm on Prednisone and since I'm on it so long I might have adrenal insufficiency now :( She is going to test for some minor hormonal gland stuff nothing major

3. Nephrologist- just gave blood for him and he ordered a kidney ultrasound but haven't done it yet, will soon. So we'll see what his blood tests show, I now I'm slightly low on creatine.

4. Pulmonologist- On my 3rd doc here. Don't ask lol But so far I got good news, I did a high resolution CT scan and it came back good, no scarring. Phew! Tomorrow I have a VQ/Perfusion lung scan to test for clotting in my lungs. My current Pulm. is stepping me down from prednisone to get an accurate pulmonary function test. He tried me on Spiriva but it didn't help at all. So far nothings helped for breathing :(

5. Cardiologist/POTS doc- Yesterday I went in for tons of testing- I did a full 1 hour tilt table test, it was awful!!!!!! I never faint of get dizzy. I was fine during all of the tilt then they gave me Nitro Glycerin and it made me feel so dizzy and sick :((( Did anyone else take this medicine during a tilt? Yuck, 1st it made my chest warm then my face then I felt so dizzy and nauseous. When they tilted me back down I had a big headache and felt so weak. Before the TTT they did a venous duplex of my legs that found nothing. He also did a BioZ test- that showed a decrease in cardiac output when I was standing, but I don't think they stood me long enough to see the full difference. He did an Echo that showed pericardio effusion. And I forced them to do an upright echo while I was slightly tilted, haven't heard the result yet... He is referring me to a Pulmonary Hypertension specialist...

That's it for now :)

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hi rich, you have been working really hard to get answers! i'm glad you've found a team of doctors willing to help you though i'm sorry it's only for a short time. maybe these docs can help you find new (and good) doctors in the area you're moving to. glad you've found a place where you no longer need to climb stairs, that'll be much easier for you!

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They gave me nitro during the tilt-- despite the fact that the techs or nurses administering the test thought that it might possibly cause my heart to stop.

My tilt was a nightmare. I think in total it took like 3 hours. I'd had a CT the day before and no one could get a line in on me. I had like 13 different sites and two blown veins before the neonatologist came in, numbed a place in my hand, and got a line in. So I was already in pain, worked up, and upset before the tilt. And FREEZING/shaking. Then they tilted me for a very long time because I never did pass out (probably because I was already in flight or fight?) and then did the nitro.

I'd say it was the worst experience with docs ever, but I had a similar situation with getting a line in for an MRI and laying there with blown veins after 4 hours of being stuck. The tilt only was the icing on the cake.

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Hey Rich,

It's nice to see you back, and thanks for updating your status for us. I didn't get the nitro during my TTT either, because I had such a major reaction right away. I only lasted about 3 minutes on my test, I can't believe they had you up for an hour! I started having a seizure on the table, so I had to stop.

Are all of these doctors located at the same facility? Are you moving far away? I'm glad you're getting rid of the stairs. That's one of the reasons we moved, too. If you're not moving too far away, it might be worth the travel to get going with this group of doctors.

Take care!

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Hey Rich-

So glad you are finding some answers. i have low IgG 1 and 3 too. From what I have read, low IgG 1 is VERY rare- yet quite a few of us have it.... That MIGHT explain your breathing issues- chronic infections etc. How low are your numbers? I think my overall IgG is lower than 500.

Can't wait to hear more about your results!


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my total IgG was 600. Right now I have a Staph infection, probably from being in the hospital or going to the dr. offices. My ENT discovered it, thank God, while he was deep inside my nose looking to see if my polyps are bad. He has me on Levaquin. I had awful mucus, that I've never had before, for about a week prior to him finding it. After 3 days it started to help, it's the fifth day and the mucus comes and goes but is overall, better. So check on the infections. But I've never gotten a lung infection before that I know of. My endo thinks it's low because on prednisone..

I wish I was getting answers that helped my breathing, but I don't have any yet :( Can this bad of breathing really just be POTS? It's scary not having a rescue medicine that would help :( what's the point of me going to the ER if they can't help? :(

Tonight my breathing is so bad i probably wont sleep, all because i walked to far down a long hallway.

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