My Appointment With Immunologist/allergist/pulm At Cancer Center

[rubytuesday]

For those of you who were watching and waiting for an update, being referred to 2 more Cancer Center specialists by the first on I saw in Feb, I just saw the 2nd.

Interesting findings on pulmonary flow-loop studies show I have vocal cord dysfunction (my neurologist and PCP dismissed my complaints of difficulty swallowing, sometimes feeling like choking and not getting in good breath). I read that this is found in EDS (which I have) and also associated with Autonomic Nervous System in some way--so I am not sure but suspicion the lax structures vocal cords/laryns may be more EDS related, but some of breathing issues could with the shortness of breath with near syncopes (from dysautonomia) make things worse.

I was found with yet another new allergy--latex. (YIKES--telemetry electrodes caused me rash with intense itchings, blistering and 2nd and 3rd degree burns, plus tape give me itchy rashy, blistery welts and now I read latex is also in intubation equipment. Having history of pneumonia/asthma/COPD, if I had to be on ventilator with IV tubings taped to me, heart monitor pads on, latex within me/around mouth and such from the intubation and not being able to speak--I will be miserable inside and out. I can't tell them how imperative it is to keep rotating the electrode pads and watch skin integrity and such). DH tells me not to cross that bridge til I come to it, but I tell him, he has to know as he may be my voice.

I was told weight loss (down to 89.4 lbs)/nausea could be coming from food allergies or from some autoimmune dis. with my skin issues (vitilogo/rashy). So had food panel, and immunophenotyping (looks for molecules associated with lymphomas/leukemias and other things), C3, C4, more IgA, IgG, IgE, Ig subclasses, a test to pick up on autoimmune/angiodema/inflammatory issues/diseases--forget what it's called. Eight tubes of blood in all.

Now doc didn't really latch on to my question about MCAS. But I don't know if any of the testing she's done may lead to that as she said, depending on results more testing/aggressive treatment might need done.

She questioned why my ID doc had not put me on IV Ig. I told her we'd talked about it but I see him Thurs. and we were to discuss it again. She said it was clear that I make antibodies--just not enough and that I need 'transused with IV Ig'--however they do it--I thought she said for weeks and then eventually home subcutaneous infusions off and on. I read somebody's post here that IV Ig has helped their dysautonomia.

I have to see her again in a month, an otolaryngologist even farther away in a couple of weeks and the 3rd hemeonclologist for the Delta Granule Storage Deficiency a week after I see this doctor back. So lots of long rides to the city so sorry for those of you who love the snow, but am asking all to pray for me for clear roads on my travel days.

[Katybug]

rubytuesday,

It's great to hear that you have docs that are making progress on diagnosis and therefore treatment for you! Please keep us updated. And, yes, fingers crossed for clear roads.

Katie