Sorry for the delay. I actually got home Friday, but was so wiped out that I slept 15 of the first 24 hours after I left Rochester. I am trying to return to what passes as normal activity for me today but fell asleep for a couple of hours on the couch anyway.
Talked with the pulmonologist Thursday afternoon. He said that my breathing problem could be best characterized as bronchial hyperreactivity rather than typical asthma, but no matter what it's called, the treatment is the same. While asthma is not typically caused by Sjogren's, there is a fairly significant number of Sjogren's patients with bronchial hyperreactivity, so who knows?
I asked how I could suddenly develop asthma as an adult. The pulmonologist replied that it was probably a vicious cycle of extreme dryness in the airway leading to mucus plugs and aggravated by infections, inflammation and reactions to irritants like cigarette smoke and cold air. So the chronic bronchitis was actually more insidious than I ever suspected.
The best things I can do at this point are to keep my sinuses hydrated, avoid cigarette smoke and people with active infections who might be contagious, and start using inhalers. I am going to be on Advair for regular use and albuterol for emergencies. As if I wasn't high maintenance enough already.
Since I've never used inhalers except during the pulmonary function tests, a nice lady came in and showed me how they work. She also gave me a whole notebook of materials on asthma. So I've got some studying to do.
Then it was time to return to where I started: the rheumatology department. The basic consensus was that since all these tests failed to reveal anything that would point to a different cause, the Sjogren's syndrome and celiac disease diagnoses are likely correct. The lip biopsy slides from 2003 were reviewed, and Mayo was in complete agreement that they were positive for Sjogren's.
We went over the bloodwork. I am still negative for Sjogren's antibodies, my sed rate is still within range, and ANA is still unremarkable. But in addition to my usual elevated c-reactive protein, I have elevated alpha-1 and alpha-2 globulins, which is new.
Dr. Osborn decided that my illness is progressing and that it is time for me to try a new immuno-suppressant. I am going to try Immuran to start with. If I cannot tolerate it due to digestive issues, I will switch to injectable methotrexate.
He also referred me to a rheumatologist in Sioux Falls that studied at Mayo. She's the only one that my insurance will cover that I hadn't tried yet. Basically, she'll have her work cut out for her as I'll just be going to her for maintenance.
I got a copy of all the December test results, and I'll get January's plus the consultation notes sent to me in a few weeks. From what I can see, some mild abnormalities, but no major smoking gun that I can point to and say, 'AHA! this alone proves I am disabled'. So I suspect I will still be battling my LTD company as they base their definition of disability on the severity of a single condition as opposed to considering that multiple less severe ailments taken as a whole can also be disabling.
For those of you actually interested in technical stuff, a few miscellaneous notes from my test results:
ECG: marked sinus bradycardia
MRI: multiple tiny foci of increased T2 signal in the subcortical and deep white matter of the frontal lobes bilaterally, likely secondary to early small vessel ischemic disease or migrainous disorder. Prominent right PCOM.
AUTONOMIC REFLEX SCREEN: postganglionic sympathetic sudomotor impairment localized to the distal leg. QSART responses normal except distal leg over which it was relatively reduced.
EMG: needle electromyographic examination showed non-specific increased insertional activity in distal leg muscles which may indicate an increased tendency for muscle cramps.
ECHO: aortic valve sclerosis. Aortic, mitral and tricuspid valve regurgitation.
I'll probably look some of this stuff up when I am less brain dead. Basically all it means to me right now is that Mayo says nothing scary is going on. These tests if nothing else will serve as baselines should I develop worsening problems that need monitoring.
After all this, I have one piece of advice: if your neuropathy is caused by a systemic disorder than can potentially cause damage to various organs, it is a good idea to have each organ system checked out at least once. If you encounter even one new problem requiring treatment, it is worth it. I wonder how bad my asthma might have gotten had I not stumbled upon it at Mayo?
If I come across anything of interest in subsequent reports (or anything that may only be interesting to me

), I'll post about it. For now, though, I've got new meds to research and a desk buried in medical paperwork to uncover before I start filing taxes.
fanfaire,
queen of annoying multiple ailments