Hi! Sneaking in at one of Mayo's computers. I'm between the ENT consult and the pulmonary.

Talked to the ENT about various things, and he took a peek at my sinuses and throat inside and out. Right now, the lymph nodes have gone back down to only minor swelling, and I just have the usual salivary gland swelling. The sinuses are rather dry, but the inflammation and infection are minor at present.

Asked about the neti pot thing. He said I wouldn't need it if I were healthy, but because I am so dry and I am unable to naturally wash away impurities that I should use a gentle rinse twice a day. I am adding a spray containing sesame oil to keep things moist so I shouldn't get as many infections and/or nosebleeds.

He said I probably won't need another lymph node biopsy unless the swelling becomes dramatic or remains unchanged for more than six weeks or so following an infection. He said that it's common for them to remain swollen whenever I get bronchitis, which has happened three times this year. Each time it has happened, the lymph nodes remained enlarged for about two months.

He told me that the best way to prevent reactive bronchitis is to keep the sinuses hydrated. And stay away from cigarette smoke and people with colds, of course. I am going to talk to the pulmonologist about the chronic chest congestion and see if I should do anything about that.

We talked about tinnitus for awhile. Mine is particularly nasty, compromising my hearing, and seems to be connected to autoimmune disease. He said that any sort of stress to the body, including noise, headaches, infections, etc. can aggravate tinnitus for as long as three days after a particular trigger.

Will try to move up the final consultation with the rheumatologist to this afternoon if I don't end up with any more tests. It would great if I could be completely finished up by end of business today.

By the way, the wind chill is -45! Yuck. Hurts my chest to inhale that frigid air.

fanfaire

Hi Fanfaire:

I was wondering if you would mind posting the name of the sesame oil spray, if you get a chance.

I know we had a discussion not long ago about the pros and cons of the netti pot or nasal irrigation and some are for this and some are not. I was somewhat surprised in my last visit to the ENT, that he is a strong proponent of this. Some docs are very opposed to this.

I have tried to reach a happy medium, by not doing this every day, but when my sinuses really start running, I do use the Neal Med system. One thing I did find out the hard way, was to make sure and aim the squeeze bottle towards your upper nasal area, not in the direction of the ear... Also, blow GENTLY... My eustacian tubes are not very good, and the last thing I need is to get ear problems going...

I know it sounds a little gross, but was also surprised at the improvement in night time drainage, if you also happen to have that.

Happy New Year,
Cathie

P.S. Forgot to mention something... Sesame oil... Isn't there a danger of inhaling that into the lungs? I thought that all oil based preparations should be avoided in the nose, for fear of developing aspiration pneumonia... Did he mention anything about this?

Cathie

what can bother ears most is asprin and asprin products,still weter in ears
from getting hair washed and blowing your nose to hard when there
is infection. My son had polups they took him in for surgery they were huge
and rapped around his vocal cords this happed twice,as k ENT what was
causing this, His answer I just don't unnderstand why he;s not choking to
death..And then there is me falling on my nose and the SS. Hugs Sue and
please be careful on way home,I bet that weather burns..

Back again. Just finished the pulmonary consult. It appears I will need some more tests.

The pulmonary function test was normal or only slightly less than normal in all but one area: the part where you exhale deeply and forcefully. That came out at only 60 percent capacity. Two possible causes in a patient with Sjogren's are asthma or obstruction from heavy mucus plugs.

I got to see the slides from my CAT scan on a computer screen. That was AWESOME, looking at slides like slices of bread in succession like an animation of my innards. Everything there looks good.

So the main question is whether I have asthma or just chronic chest congestion. I will be doing a spirometry with Methacholine in an hour. This I believe measures how you react to air irritants?

Tomorrow, I do another breathing test: I believe it's exhaled Nitric Oxide? Then in the afternoon, I go back to the pulmonologist and we determine if I will need to go on some sort of inhaled medication. If the cause of the breathing problem is heavy mucus plugs, I don't know what might be done for that.

My final wrap-up with the rheumatologist will be late tomorrow afternoon. That will mean I can be home by Friday afternoon, which is way cool. My in-laws are watching our dog this time, and they don't know a thing about pups.

About the sesame oil: you can use any brand. I was warned to spray GENTLY with a mist sprayer, not to use a pump sprayer or inhale it sharply as I want to avoid the chance of aspiration. This is not something I would recommend to a healthy person, but my sinuses are so dry that right now I'm catching any little bug that comes my way, so I am willing to give it a shot.

Gonna go see if I can finish my book. The view of Rochester from the pulmonary department is pretty cool as it's on the 18th floor. Now if it weren't so doggone cold....

fanfaire

Yes methacholine Challenge is used to determine if you have asthma. They use increasing concentrations of irritants. If you drop below 80% of your baseline established at the beginning of the test then that confirms asthma.....when you do the baseline expiratory breaths try as hard as you can since this then establishes a reliable base to measure the decrease caused by the irritants...i hope you see this.....good luck....i have had 3 of them

For chest congestion i have found this very useful, sit on a chair facing the back of the chair and rest on the back. Have your husband pound on your back with a closed fist using the bottom of the fist along the pinky. Not too hard not too soft, not enough to hurt. Do the left side top to bottom along the lung length and then the right side and then the left and then the right etc. It should loosen everything up and you will probably be coughing after a few times. I usually follow that up with nebulizer treatment immediately, or if you dont have a nebulizer you can steam up the bathroom. It helps me i hope it helps you. It has saved me a few ER trips.

Popping in really quickly before my last test. Guess what? I have asthma!

I am totally shocked, but I did have a reaction to the methacholine. I got an increased sensation of heaviness in the chest, and it was noticeably more difficult to exhale forcefully. My results were indicative of mild asthma, so not terribly worrisome, but there was a measurable difference nonetheless.

So when I see the pulmonologist again this afternoon, I will ask him if this is another fringe benefit of Sjogren's or a separate problem altogether. Don't know if this is enough of a problem to treat, but it's good to know what's going on. Those Sioux Falls docs who blamed my shortness of breath on deconditioning were definitely off base.

Don't know if I'll get to post again before I get home, so I'll just say here: thanks for all your responses! Like the Grateful Dead song says, what a long strange trip it's been!

fanfaire

wait for the next installment. I do hope you get home to safety and warmth. You'll probably be mulling a heap of info over around and through your mind to try and sort it out...I hope it comes out with not only answers, but some things that can be done about the real problems! Not to mention the pain. Thank you truly for keeping us all up to date. I hope you felt us all pulling for you. Hugs and hope! - j

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