About test results...??? and other puzzles

[Fluffysmom]

Well, I got my chart notes from my rheumatologist's visit.  He lists all of the test results that I've had come back negative, and I'm wondering how close this comes to ruling out things like other auto-immune diseases.

He said "overall, my impression is that the current available data are not supporting a diagnosis of Sjogren's Syndrome. "  Yay!

I'm curious that he called my ANA negative, yet ordered ENA, which would look for markers of specific diseases that would raise the ANA.

The only diagnosis he lists is Arthritis.

So, do all those negative tests rule out the other stuff, and therefore encourage my MS specialist to look a little closer at MS, or has this been another exercise in futility?

One thing that he wrote that made me curious, after describing my first neurological symptoms (and none of the ones that followed that first introduction) :

"These symptoms led to serial neurological evaluations by several neurologists and investigations including MRI and lumbar puncture.  CSF was normal, but MRI findings were non-specific and MS was suspected but was not supported by MS specailist's evaluation".

First of all, a neuro-radiologist's report for two brain MRIs that states "far and away most likely to by multiple sclerosis" doesn't sound too non-specific to me.  On the first MRI, the report said "Conceivably microvascular disease could present in such a manner, if the patient has an underlying medical disorder such as hypertension or diabetes which predisposes her to fairly severe microvascular changes.  This should be correlated with the patient's history".

I have no such underlying history; nothing in it points to anything that would cause fairly severe microvascular changes.  My BP at this last vist was 116/68, for pete's sake!

And yet, three neurlogists have said that they suspect I have small vessel ischemic disease.  The last two left MS in the differential diagnosis.  They apparently don't consider my neurological issues severe enough to "count".

I know that the fatigue, dizziness, vertigo, loss of balance, blurred vision, etc. have really interfered with my life.

I see my cardiologist on April 6 to try to shake off the small vessel ichemic disease shadow that seems to keep my neuro from seeing anything else.

Oh, yeah, the questions were; do the blood tests rule things out, and do you think my rheumy's comments about "serial neurological evaluations" were a negative thing to have in my medical chart?

Shoot, I've got to go drop off my car so they can do a tune up on it tomorrow; my friend and her mom are picking me up and taking me to dinner, then I'll get a ride tomorrow afternoon to pick it up.  I'll try to check in later, or I'll see you all tomorrrow.

Kathy

[Fluffysmom]

I actually checked several sites; most said the same thing, although some were more polite.  The only ones that didn't suggest psychological issues were the ones that left off the "Syndrome".

This rheumaltologist is just my age, and I guess I'm glad that he hasn't experienced long term chronic pain, though I wish he understood that there is evidence of causes for much of my long term pain, and that he doesn't really dismiss his patient's issues so easily.

I'll take my notebook with all the MRIs and chart notes from my sports and spine medicine doctor and all that good stuff.  I wish I hadn't forgotten it last visit!

I did see a therapist about my pain after my chronic pain management classes, and she told me that I didn't need to be there; that I was well able to handle what life was throwing at me.  Hmm, wonder what her chart notes are like?.....

I'm sorry about your friend's pain.  

Kathy

[essdipity]

I'm not really familiar with chronic pain syndrome, but I'm better that whoever is insisting that it's all psychological has never suffered from pain long term. Was that from a reputable web site?

My oldest friend has post-polio syndrome, which involves permanent and severe pain. I'm sure she'd be glad of a psychiatric diagnosis if those meds would help her. She sees a physiatrist for pain management.

Anyway, best of luck with your cardiology appt.

ess

[Fluffysmom]

Well, I'm pretty well prepared for my visit with the cardiologist; just need to actually type up my questions for him with space to jot down his reply.

I have my records all together, highlighted some things, will flag others.

I remembered that the rheumy asked me if I had heard of Chronic Pain Syndrome, and I told him that I had been dealing with chronic pain for so many years that I know all about it, have taken classes, practice meditation, etc.

I just googled CPS, and the first article was about how it was mostly phychological, and that the patient's pain persists long after the reason for it, because they are rewarded in some way.

It went on to say how they often have problems with drug abuse, anger, depression, etc.  I understand that, but it really doesn't apply to me.  

I went in to see him to rule out Sjogren's Syndrome and other possible autoimmune diseases, not for help dealing with pain.

I was curious about his comments about my " serial neurological evaluations by several neurologists and investigations".  Maybe I was correct in my feeling that he was dismissing my other very real symptoms based on his not finding evidence of Sjogren's.

I'm glad the flaxseed oil, warm compresses on my eyes, and massaging my glands helped improve my dry eyes and mouth.  Would his opinion have been different if he had seen a big conjunctival cyst in my left eye, or the imprint of all my teeth in my dry tongue, and sores where my teeth rub on the dry insides of my mouth?  Whatever.

How do I approach my follow-up visit with him?  

Calmly, I suppose. :o)

I'll ask him for that long "laundry list" of what he's ruled out.

Any other suggestions?

Thanks,

Kathy

[sllowe]

I think you are on the right track with your Cardio of course.

I also think that a question is in order for this Dr. (after the cardio appt.), which would include the long laundry list of what you "don't" have.  Then, followed up, so, what do you think I have, and where do I go from here.

Like you said, this rheumy further ruled out mimics, it seems.

Daggonnit, Kath.  Sorry you have to add on another step to this process, but it's the logical next move.

-shell

[Nancy T]

Ditto, Kathy--good luck with the cardiologist. Hope you get some helpful information.

[Lulu54]

Like I said Kathy, it was a stretch but I also thought an interesting read.  Unfortuantely my brain doesn't retain the details like yours does and I will now have to go back and read it again.   :-)

Good luck with the cardiologist -

keep searching,
L

[Fluffysmom]

Hi Lulu,

I read the article; it is interesting, even though the subject had rheumatoid arthritis and was 20 years older than me; still made me want to stop taking my b/c pills and see if it helped with my tremors.  Although my tremors are not at all like chorea, it still was interesting.

Then I got started researching small vessel ischemic disease and possible hereditary links.  I realize I should keep an open mind.  My mother had several strokes, but she also had poorly controlled high blood pressure, high cholesterol, and congestive heart failure, among other things.

I suppose CADASIL is a possibility; mom could have started with that but also added many risk factors that contributed to large vessel issues.

After a few hours of reading, I still return to the fact that I experienced neurological symptoms (tremors, loss of balance, fatigue), had an MRI, and all those lesions were discovered.  

There was no sign of an acute ischemic insult, or it would have been noted.  If I had a small stroke I think it would have shown up on the MRI 17 days after the acute onset of tremors.  Of course, they didn't use contrast.

I'll have to make a list of questions for my cardiologist when I see him.  I asked neuro #2 about hereditary SVID, and she said there was a test that was around $1000 that insurance wouldn't pay for.  I found one article that said it was covered if medically necessary; I wonder how they prove that?

I thought that my neuros stopped at the possibility of SVID and barely looked further, because of the distribution of my lesions, and didn't really consider that I could possibly have MS or a mimic, and only did further testing because of my insistence.  Neuro #1 sent me away and told me to come back in a year if I felt it would help me.

After reading, it looks like most of my symptoms could come from small strokes, or migraine with aura (common with CADASIL).  Some things fit, some things don't.  I hope my cardiologist can help figure it out.  I know of an excellent cardiologist to see if this one doesn't have valuable input.

It still seems to me that my second MRI with contrast would have shown enhancement, as it was done a few weeks after that weird vision/extreme fatigue and weakness event in Phoenix if it was a stroke, or something more than the same lesions as 4 months prior.  

Maybe the fact that my PCP insisted on an EEG first put the MRI too long after the event for it to show up, though the neuro-radiologist stated that there was "no evidence of acute ischemic insult".

The tune-up on my car is costing $$$, since I needed some routine maintainance to keep my warranty valid.  I suppose it's worth it to keep my car healthy, but OUCH!  :o)

Kathy

[Lulu54]

Hi Kathy,
I started looking for links between arthritis and small vessel ischemic disease and found this article - it might be of interest to you.  

http://www.nature.com/ncpneuro/journal/v1/n2/full/ncpneuro0052.html

Also, have you considered any of the hereditary risks for SVID?  Just wondering since the neuros keep coming back to this possiblity.  

Sorry I can't tell you much of anything about the blood tests.

If only you could get a tune-up on you, like you can your car.  LOL

Good luck with sorting all this out,
Lulu