I can't find a summary of what they concluded; did you post one? If you did, could you point me to it; if not, can you summarize?

I've been working on a "diary" of my visit for a few days now. Actually, I'm just gonna post what I've done so far because I still have pending appointments and don't have any idea of the results of most of the tests. Please forgive me if some of this is review because I'm still pretty brain-fogged and exhausted and can't remember what I've said where.

Left Sioux Falls on Sunday, December 2nd for Rochester. Should have been an easy drive but was complicated due to ice and high winds, and we passed lots of overturned and wrecked SUVs and pickups. We left about 10:30am and got to our destination, the Extended Stay hotel, about 3pm.

Was bitterly cold. If you ever have to go to Rochester in December, I recommend an oversized winter coat that can go over big sweaters and waterproof heavily insulated boots and some sort of head covering. For indoors getting around Mayo, you can get by with a lighter jacket and tennis shoes, but dress warm when travelling.

The Extended Stay was cheap but still nice. I got a handicapped accessible room even though I don't use a wheelchair full time, because I needed grab bars, and these rooms had the showers with a seat in them and no tub to have to climb in or out of. There was also a working kitchen, so I just brought food from home, bought a few perishables from the grocery, and I was good to go.

The hotel had a free shuttle service running every hour during the hours the Mayo Clinic was open. I needed to be at the Admissions desk at 6:45am on Monday the 3rd, so my husband and I jumped on the shuttle at 6:00 and made it in plenty of time. Got to talk to someone else at the hotel who'd been in town for awhile, and she was very helpful getting us pointed in the right direction.

Was glad I left my wheelchair at home, because the ones at Mayo are MUCH nicer! There is a whole fleet of them right at the entrance to the clinic, and they have padded seats and padded calf rests. Still, I recommend bringing your own stadium cushion to sit on if you have a lot of low back pain.

My first appointment was at 7:30 with Dr. Osborn in rheumatology. Very different from the awful rheumatologists in Sioux Falls; he wasn't in a big hurry, and he didn't treat me like I was wasting his time. We went over the history of my Sjogren's symptoms; I was very nervous and tired and left out some things I hadn't meant to, but I'm pretty sure I got the most important things across.

Much to my relief, Dr. Osborn had a sense of humor (a rarity in rheumatologists), which helped because I tend to joke when I'm nervous and/or tired. Knowing that people with Sjogren's dehydrate easily, he asked where my water bottle was, and then laughed when I showed him the sports bottle attached to my shoulder with a strap. When I mentioned that my eyes usually felt like they had sand in them, he said, "Yeah, I call that the Sahara sign".

But he did note all of my symptoms, even the ones I wasn't sure were relevent. He looked pretty closely at my rashes and the petechia on my legs and noticed some scarring that I had forgotten about. He also found some swollen glands in my neck I hadn't noticed because I'd been distracted by the swollen lymph nodes.

During the exam, there was something about my heartbeat that didn't seem right to him? I cannot remember what he said it was, but he did mention that Sjogren's can affect the heart (although I believe it is pretty rare). Because I'd never had my heart looked at before, he scheduled some tests.

He took note of my icy hands and feet, the poor grip strength, the non-reflexes in my heels. He checked all the areas I have arthritis, which is pretty much every major joint except elbows and shoulders. And we talked about the neuropathy symptoms, about the pain and numbness being now accompanied by feelings of something on the skin and odd vibration, and how my acute episodes have responded to prednisone.

We talked about me having negative antibodies. He said he would check them again because it had been three years since the last test, and some labs are more sensitive than others. He told me that I may have negative antibodies now because I'm relatively young (43) and am relatively new to the ailment, and that I'll probably test positive at some point in the future, but that doesn't mean that I'm not really sick now or that I have a minor case of Sjogren's.

We went over my meds. We talked about stronger immuno-suppressants than the daily one I am on and what does and does not work for Sjogren's. Dr. Osborn felt the best thing to do would be to check any major organs that had not previously been examined for evidence of autoimmune damage before deciding on a course of treatment.

It was very nice to not be dismissed as a know it all or placated like a child. There was one point, though, when I was talking with Dr. Osborn about the manifestations of vasculitis in Sjogren's, and I happened to glance at my husband and saw that he was just staring at us with no idea what we were referring to! Oh well, it was good that my husband got to see me being taken seriously by a doctor.

Once I left Dr. Osborn, it was time to let the testing begin. I started with the usual blood sample; eight vials (my current record for a single blood draw is 10). And they got the vein the first time and used a small needle, which always helps.

Then I was free to end my fast. I celebrated by drinking a Boost while my husband checked out the cafeteria. I noticed they list nutrition information on the food at the cafeteria, which is pretty cool, but I never got to try any because I brought all my own food due to my restricted diet.

Next, I was off to the cardiac department. They did an ultrasound of my heart, which was painless, and I thought it was really interesting seeing what my own heart looks like. The technician even pointed out to me what all we were looking at.

The next test was I think the EKG? Funny, they spent way more time hooking up the various electrodes than running the actual test. Also painless except for the fact that my skin is sensitive to adhesive and some of my skin came off when they removed those little patch thingies.

I fatigue extremely easily. I had already started dozing off between tests and at the end of the ultrasound test when we were waiting for a doc to review it. By the time I got wheeled in for the full body CT scan, I had slept in a hallway in my wheelchair wearing a hospital gown for half an hour!

Hadn't had a CT scan since 1986. This was way faster and more efficient than what I remember. They captured images of slices, like slices of bread, of my mid-section, and all I had to do was breathe or not breathe as directed.

By the time I completed the CT scan, it was 4pm, and I was more than ready to head back to the hotel. Our friends had loaned us a portable DVD player, and I tried to watch a movie that evening in the room, but I slept most of the way through it. Probably just as well because I needed to get up at the crack of dawn the next day anyway.

Tuesday the 4th started with an EMG. I'd had one in 2004, so I knew what to expect. I was exhausted at having to get up at 5:30 to catch the shuttle, so no problem with me being relaxed for the test.

Part one is what I call the cattle prod test. They zap your nerve with a taser-like device, which I found not exactly comfy, but also not terrible. They did arm, leg, hand, foot.

Part two is what I call the pincushion test. They put a needle into your muscle and have you flex it while electrical activity is noted. Unpleasant, but unlike the test in 2004, not unbearable, and they were able to test areas like my upper arm and spine that I couldn't tolerate before.

When I got done being a pincushion, I had my husband take me to Mayo's coffee shop so I could get some hot green tea. This was in preparation for the sweat test, the idea being that the warmer you are before the test, the less effort it will take to raise your body temperature during the test. At any rate, I was grateful for the break.

Then it was time to pretend I was at the beach. First I was weighed, then I got to lie down wearing only a paper bikini, and then I was liberally sprinkled with an orange powder, and for the finishing touch I got a thermometer attached to the inside of my mouth. Now I was ready to bake.

All I had to do was lie still while I was wheeled into an area sealed off with plastic that had strong heat lamps overhead. I found it very ironic that they piped in Christmas music, but it gave me something to listen to. And of course it should come as no surprise that I promptly dozed off and sort of wafted in and out of sleep for the next half hour while I was observed and checked in with periodically.

Except for the hands and feet, no sweat at all for over 30 minutes. Then all of a sudden, it was like someone flipped a switch, and the floodgates opened. It took 15 more minutes for me to turn the orange dye completely purple (it does that when it comes in contact with sweat), but I did manage to accomplish this.

When I had fully become a Barney look alike, the technician took photos of the results and then helped me sit up for awhile. I was feeling weak and dizzy, so I waited until that improved before I got up and attempted to wash off the purple dye. After a shower that got rid of maybe half of the dye that had soaked into my ultra-dry skin, I was weighed again, and discovered I had lost an entire pound in less than an hour!

When you are given a schedule of appointments at Mayo, some of the consultations might be scheduled for future weeks or even months. Knowing that most patients can only be there for a limited amount of time, Mayo allows you to volunteer to be a checker, meaning that if you are willing to sit in their waiting room for most or part of a day, they can try to squeeze you in earlier. This can work in your favor in the winter when bad weather causes other patients to miss or cancel their appointments.

Because there was a significant snow storm in Rochester on Tuesday evening, I arrived at the clinic first thing in the morning on Wednesday the 5th and asked to move up my neurologist consultation. I not only got in, my appointment was at 8:15, leaving me plenty of time for other tests. The doctor I met with was Joon Uhm.

He already had the results of the EMG and the sweat test. The EMG was essentially the same as the one from 2004 with only mildly abnormal results. The sweat test was not significantly abnormal either.

We went over both my neuropathy symptoms and the strange stroke-like episodes I have had, where I get one-sided migraines accompanied by speech and cognitive impairment as well as numbness and motor skill problems. I also told him about symptoms like dizziness when standing, irregular heart rate, problems swallowing, difficulty adjusting to sudden changes in lighting, incontinence, etc. And I told him about previous tests that had ruled out MS, stroke and other diseases.

Dr. Uhm explained to me that while primary Sjogren's is progressive, it can also be episodic, mimicking relapsing/remitting MS. Chronic migraine is common in Sjogren's, and while the stroke-like episodes are unusual, they have been documented with Sjogren's patients with neurological complications. So the increase in new neuropathy symptoms may be a blip on the radar, or it may become more frequent over time.

I discovered during the exam that I can no longer hop on one foot. I can stand on one foot in a wobbly sort of fashion, but the foot that's on the ground really wants to stay there. And walking with one foot in front of the other makes me lurch like a drunken sailor, so I hope I'm never pulled over by the cops and given a sobriety test.

Dr. Uhm was particularly concerned about the stroke-like episodes and chronic migraines and decided I was in need of further tests. He scheduled a tilt table test for autonomic dysfunction, an MRI with contrast of the brain and neck, an ultrasound of the top of the heart, and a lumbar puncture. He said the spinal tap would be optional and that if I couldn't fit it in, I could have it done in Sioux Falls later on.

I also got some more blood drawn. They were checking for antiphospholipid antibodies and other stuff. Made a joke to the lady with the needle about her being a vampire; thank goodness she found that funny.

Then I had a three hour gap before my next test. Not enough time to go back to the hotel on the shuttle, but too much time for me to be comfortable waiting without getting some sleep. That was when I had my mini-meltdown, when I realized that I wasn't going to be able to get everything done before my husband would have to go back to work on Monday, and I was far too exhausted to see a solution (I found out at the end of my trip that Mayo does have a "quiet room" for patients to take naps, handy for future reference).

After an hour and a half of dozing off while trying to figure out the schedule (and a few times in mid-sentence while trying to have a conversation with my husband), I was able to get my head together enough to form some ideas. I cancelled the lumbar puncture, asked to combine the MRIs to save time, and decided I would try to move my autonomic test from Friday to Thursday, possibly freeing up time on Friday for consultations.

Then I was off to tackle the pulmonary function test. This is where you sit in a clear box the size of a phone booth and breathe into a tube that measures how long and how forcefully you exhale both before and after you inhale something called (I think) albuterol. A second part of the test is supposed to be measuring your breathing while you go up and down a step, but I had to skip it because I am physically unable to move fast enough to do it properly.

Thursday the 6th started with an MRI at 6:30am. I took some Valium beforehand to cut down on the possibility of muscle twitching while I was doing the test, but I slept through nearly all of it anyway. Good thing too, because I was in that little tube for quite a long time.

After a Boost break, I headed to neurology to see if I could get my autonomic test done early. I did manage to get in there in the afternoon. This is the one known as a tilt table test.

First, they are supposed to attach these capsules that stimulate certain nerves to respond to the sweat impulse, but my limbs were ice cold, so they had to warm them up first. They stimulate the capsules with an electric current, which feels like bugs on the skin but is tolerable. They do a do a breathing test while monitoring your heart rate and blood pressure.

Then comes the fun part. While monitoring your blood pressure, the table you are lying on is raised from a flat position to a 70 degree angle. I felt like I was still moving after the table stopped, my blood pressure dropped some, and I was a little wobbly, but no fainting or anything major happened.

Because of my creative re-scheduling, I only had one test remaining on Friday: the ultrasound of the top part of my heart. This is more complicated than it sounds because to get a clear picture, they put a tube down your throat with a camera at the end of it, so you need IV and local anesthesia. I am sensitive to anesthesia, so I had them give me the lowest amount necessary; I was awake during most of the procedure and got to see my heart illustrated in pretty colors on a screen, but the tube down my throat started bothering me and they gave me a little more medication and I don't remember the rest.

I had a four and a half hour gap between the ultrasound and my final consultation with the neurologist that afternoon, so I tried to get squeezed in to my ENT consultation. No such luck. I waited for four hours, trying to play a hand held video game because I was too messed up from that morning's sedation to read.

But I did get back in to see Dr. Uhm. The ultrasound came back fine, and the autonomic test was not far enough off of normal to require me to change anything I'm already doing. The MRI showed no clots, inflammation or MS-type lesions.

But there WERE some plaques on my brain that were not there on my last scan in 2004. I'm not clear whether they are the cause of my chronic migraines or the result of them, but the neurologist felt there was a definite connection. They probably don't have much to do directly with neuropathy.

Regarding the neuropathy, he felt that it was too early to be doing any invasive biopsies because they might not reveal anything yet. But he told me that because Sjogren's is not curable, the time will come eventually when those procedures will be needed as well as stronger medication. At present, though, he thinks the side effects of potent immuno-suppressants would outweigh the benefits (I am incredibly sensitive to medication), unless evidence is found of organ damage.

He said that if start experiencing more consistent or wider-ranging numbness to come back in and he will arrange for biopsies. And he said if I have another stroke-like incident to call his office immediately so it can be investigated while it's happening. As for all the tests I had, he said that at the very least, they can be considered baselines to measure future tests against in the coming years and decades of having Sjogren's (I intend to live a very long time, of course).

Dr. Uhm had very high praise for how I've successfully managed my diabetes for the past three years. He said I have probably spared myself a considerable amount of nerve damage seeing as how diabetes combined with Sjogren's can really get the neuropathy going. He commented that all the medication in the world can only do so much if the patient is not willing to take good care of themselves.

Because I had all my tests completed, my husband took me home on Saturday the 8th. I have three consultations left: the ENT and the pulmonologist on January 2nd, and the final wrap up with Dr. Osborn in rheumatology on January 3rd, so I will have to come back that week. It is then that I will find out the results of the rest of the tests, figure out a treatment plan, and get a referral to someone who can treat me long term.

So that's what it's like to go to the Mayo Clinic. Your results will of course vary, particularly if you have more pervasive neuropathy or more serious health problems. I wouldn't say it was fun, exactly, but it WAS a learning experience.

fanfaire,
now in Zombie-land

--you produced a great and well-reasoned summary.

It will be interesting to see exactly what the test results show--be sure to get copies and report on them then.

I'm intrigued by those little plaques--they are common with migraine, which is now considered by many to be a type of seizure disorder, but there may be a chicken-and-egg aspect to how they got there, as you've mentioned.

Then, too, Sjogren's is increasingly being recognized as a body-wide illness, like Celiac and lupus--even thought he hallmark is an attack on the moisture producing membranes, both central nervous system and peripheral nervous system debilitation has been documented (though too many doctors out there haven't kept up on their continuing medical education regarding this). There is the possibility that the plaques are related directly to the Sjogren's antibodies. The Washington University website mentions this:

http://www.neuro.wustl.edu/NEUROMUSC...n.html#sjogren

--and I know there's been some speculation that the plaques resemble some found in MS . . .

At any rate, glad you made it through in bascially unbowed fashion.

That was a very good summary, but I'm still waiting to know if they consider your biopsy (did I miss something?) positive?

I hope you can recover from all of this.

Billye

I'll know the complete details when I talk to the rheumatologist January 3rd, but the original lip biopsy slides from 2003 were reviewed, and the consensus was that they agreed with the original findings of being consistent with Sjogren's syndrome. I do not know if the new antibody tests showed anything, but I would be surprised if anything has changed there. I seem to have the most normal blood in the world for having these various ailments.

fanfaire

Yeah, the plaques intrigue me too. I was tested for MS on three separate occasions starting in 1998, and nothing at all showed up then. The neurologists in Denver were basically treating me like a hypochondriac until my biopsy in 2003 showed I did have an autoimmune condition, just not the one they were expecting.

I hope research on these disorders continues and that someday doctors will be able to connnect the dots. Then there will be a lot fewer patients being shuffled off to shrinks because the neurologist has no idea what might be wrong.

fanfaire

So they absolutely think you have Sjogren's, and your EMG's are abnormal, just not wildly abnormal, so they documented the neuropathy, right?

So one way or another, it's a diagnosis? They do not think it's diabetes and they do not think your biopsy was a "false positive". This is good in case you ever have to deal with disability. I've discovered that having been to Mayo and having them make a clear diagnosis makes a good case that insurance companies are not eager to pursue in court, so they may be a bit more flexible or lenient in their decisions.

I mean, I really think it was when I sent my disability company my Mayo records that they became willing to pay me more to buy me out, and realized I was going to cost them a lot, but they'd have a hard time in court.

Of course I'll get the whole story next week, but I don't believe anything was found to explain a possible false positive. Also, I have too many symptoms that are typical of Sjogren's for the positive biopsy to have been a fluke. The lymphadenopathy, esophageal and digestive issues, extensive arthritis, Raynaud's and neuropathy all point to autoimmune disease as the most logical culprit.

I'm hoping you are right about the disability issue. I've still got a long road ahead of me with the LTD guys because no matter what evidence I provide them, they'll still argue that I am only mildly impaired and should be able to work, BUT the company probably won't be able to get away with their claim that I don't have any autoimmune disease. And while I do have diabetes and realize it can cause a whole host of health issues, I have it under excellent control, and the neurologist was of the opinion that the problems I am experiencing are most likely from Sjogren's.

If nothing else, when I am up for review with Social Security next year for disability, I should have no trouble getting those benefits continued. Their main requirements are providing evidence that I am continuing to be seen by appropriate treating specialists and that my condition has not improved enough for me to return to work. Even if the folks at Mayo come up with a new treatment plan for me, Sjogren's is famous for not being easily managed, and it is unlikely I would get well enough to be able to hold down a job anytime soon, if indeed it ever happened.

I do hope the LTD company will realize that Mayo's opinion, no matter what it may turn out to be, would not be worth trying to dispute in court. I think it would at least send the company a message that I have been completely honest with them about the nature of what is keeping me from being able to work and that it would be in their best interest to either settle or reinstate benefits.

fanfaire,
who is still struggling in zombie-land