Hey did they ever find out what was causing your Pulmonary Hypertension, and what are they doing for you?
I go for more tests this week.
Had been wondering how you were doing with it as well.
love Lizzie

Nope, they are still researching it because it's so borderline. They've even put off off the cath because the pulmy is so afraid of the anesthesia exacerbating the MG and my breathing (which is pretty bad from the MG). We've just done a couple of echos so far. I see him at the end of January, get another echo and go from there. I've been off birth control pills since Sept. for unrelated issues (too bad too, cause I feel so much better fatigue wise, ON them!) and supposedly taking the Pill isn't good with Pulmonary Hypertension. So, who knows, maybe that will improve things or slow things down.

The pulmy does have a couple of theories. First of all, other autoimmune diseases raise your risk. Like schleroderma or Rheumatoid Arthritis, MG is also an autoimmune disease. And several AI diseases run rampant in my maternal genetics. So there could be a link there.

Also, I have been on a ventilator several times in my MG life and for extended periods. Could be that. I had plasmapheresis 3 times a week for two years about 25 years ago....Could it be that??

My bloodwork showed that at some point in the past 10 years, I was exposed to Hep B and my body is ok from it. I'm not contagious to anyone, it's like run it course. Very strange, since...aside from IVIG, I really don't fit the criteria for risk factors.

Some of the immunosuppressants I have taken in the past may be a contributor, but since I have gone the gamut from prednisone, to oral Cytoxan, to Imuran, to Cyclosporine and Cellcept together to Imuran and Methotrexate and IVIG... I am just a big ole puzzle

So, I have nothing new to report at this time. No treatments yet. I read you were also diagnosed with this, very sorry to hear about that.

When I see Dr. Allen at the end of January,I'll let you know what he decides. Apparently, I appear to be a the very minor end of this spectrum and he just does not wnat to push me over the MG edge doing invasive diagnostics.

Happy New Year! I'd add healthy to that, but what's the point?!

Big Hugs,
Ro

Hey, Wow, we could be sisters, nothing wants to run right for me either.
And I seem to always be backwards with everything.

I had the Right Heart Catherization yesterday. It showed my pressures to be 26 and 27, so the cardio who did it, says it's normal. I wish I was thinking yesterday, as the PH specialist said anything above 25 was abnormal, but I was so tired, and just wanted to go home, and it was getting so late, and it's a 3 hour drive. My husband drove me, but still, it's really hard on me.. I'm so exhausted today.

I got a little scared, as my cath site had a couple drops of blood. but I haven't had any since this morning when it happened. If it happens again, I'll go down to the er.

Last time I had this happen, I had to have that stupid clamp put back on..I really hate those.

I'm sorry, they haven't been able to do anything yet for you, from what I was told, one should see a PH specialist to be certain, it's not something to mess around with.

You know though, the expert, who is very nice, and is probably one of the tops PH specialist in the country told both myself, and my husband that he was pretty confident that I had PH. When he listened to my heart, and chest, he said I sounded just like all his other PH patients , and my echo said my pressures were 45, so when they checked through the cath, and it at first said 27, so they were kind of thrown off, and redid the test, and it said 26. So now, they're saying no.

Can't understand it all, but I'm going to just trust that they know what they're saying, and doing.

I've wondered how you're doing often.
Love Lizzie