your oppinion on my symptoms

[Forgetfullkaykay]

Hi guys -

So I'm going to post my log - I appologize in advance if it's just TMI, but I have tried to keep it as seccent as possible.  My question is, last MRI came up unchanged.  My symptoms are not really that bothersome, except inasmuch as they worry me that something other than Lupus is going on.  So IF it looks to you like MS, does it look like a primary progressive pattern?  Which can't be treated effectivly anyway so is it worthwhile to pursue a Dx?  AND ALSO -  IS THERE ANY OTHER Dx FOR THESE SYMPTOMS THAT MAKES SENSE TO YOU???

if you want to mark which of these symptoms sound like MS and which sound like something else that would be helpful.  Keep in mind I have Lupus, though it is a recent dx.  I also want to mention the migranes, I am 51 years old already but the migranes are new to me, never had them as a young woman.

I'm sorry to post all this, I wish I could just relax about all of it but it's bugging me too much.

duration                 ongoing     intensity
2004 fall passed out - Berkeley once
constipated, urinary issues ongoing x 3-4
feel like always need to urinate x 2
2007 fall problem getting eye rx ~1 month
passed out at golds gym once
dx low blood sugar
? ? jiggly eyes, high, floaty ~week 1
2008 fall winter raynards freq seasonal x 2
super fatigue occasional x 3
high floaty occasional x
joint pains rarely 4
prob word finding sometimes x
confusion, concentration, reasoning sometimes x
2009 Jan positive ANA, dsDNA,elev C3 or C4
super fatigue 3
vit d deficiency  - corrected
2009 spring mouth sores, weekly x 1
joint pain, night pain rarely 4
2009 summer dizzy aft walking -aft sun exp &exerc frequent x 3
fell twice
2009 LaborDay severe dry eye 3 mos x 4
to Jan 10 nausea, vomiting 3mos
swallowing problem ongoing x 2
globuls feeling always x 1
GERD, urppy, cough ongoing x 2-3
knee, hip night pain, can't walk rarely 4
pain, numbness in index finger occasional x 2
developed tinnitus ongoing x 2
started plaquinell and GERD med
eye plugs installed, strt restasis
dx SLE
2009 Oct San Antonio skin sores rarely 1
small itch, bleeding spots from sun 1
2010 spring event aft walk lunch hour:
momentary loss of sensation in right hand once 3
dizzy, disoriented, confused occasional x
peripheral vision impaired once - breif
spring episodes of dizziness occasional x 1-2
spring ridiculous itch once x 2
10-Feb off of plaquinell 30d see if tinnitus resolves
joint pains return during drug holiday
tinnitus did not resolve
spring constipation turned to IBS x 4
constipation can be constant chore constant xx 4
increased digestive issues, gas, belching 2
vomiting rarely
poorly digested waste
buzzing - elect chills occasional x 1
2010 summer fleeting intense head pain occasional 3
2010 Nov MRI four white spots
2010-11 summer through winter felt GREAT
2011 spring sailor legs & eyes frequent x 2
flushing - (butterfly rash?) frequent AMs 1
2011 April Omaha migriane, huge pain once 4
left side behind eye, tearing
light sensitive, lasted 3 hours
repeated every day x 3 days
2011 30-May Migrane, 2 day  -cluster headache 3
1-Jun noticed twitches muscle movement many x hourly 1
tripping daily 1
lips and fingers tingly
June 5th sparkley visual show - kalydascope like

one other note for clarification, I sometimes travel for my work, it seems like this aggrivates my health so I've noted various trips in my log, just to help me remember.

thank you for your review and comments.

[Forgetfullkaykay]

Thanks Deb -
I think if it were only the ANA they would have passed it up but the positive DsDNA is pretty specific for lupus as is the elevated C3 and C4.
I wish there were an MS specialist in this area but I don't see that there is one  (Boise Id).  This dr was recommended by my Rhumy so is supposed to be familiar with lupus complications, but, as you say, it gets complicated when there is an existing dx of Lupus -I think he isn't sure because of that.  Plus now I'm at an age where some spots might be found anyway ?  I think.

that's so interesting that 1/3 of MS pts have positive ANA, I did not know that -
well thank you so much for the discussion.  I feel a bit relieved actually, maybe just to be able to talk about it.  I refuse to mention any of it to friends and I don't want to obsess to much to my husband.

I hope your LP test comes back soon and isnt' too bad.  I will watch for your post on it.
Maybe my symptoms will go away for awhile.  That would be nice, I could enjoy some of the summer.

thanks for sharing cost info with me.  I'm so tiered of spending my money on this stuff!!

[Deb61]

One more thing.  An ANA above 1:80 is generally not found in the general population, but the number is always disputed among doctors. I think the consensus is that the cutoff of 1:80 generally means something is going on.

[Deb61]

You may want to see an MS specialist--A neurologist that specialized in multiple sclerosis.  You don't have to have MS to see one.  They are experts in cases that are complicated--like yours.   Anytime you have spots on your brain, the doctor shouldn't foofoo (is that a word? LOL) it off.

Deb

[Deb61]

A low-titer ANA is found in the normal population.  I have book that I often referred to when I thought I had lupus called The Lupus Book:  A Guide for Patients and Their Families b Daniel J. Wallace, M.D.  

When it comes to differential diagnosis, on page 112, Dr. Wallace writes "Autoimmune disorders that affect the CNS include myathenia gravis and multiple sclerosis:  they have an increased incidence among lupus patients.  Myashenia gravis is characterized by rapid muscle fatigue and repetitive tasks, while multiple sclerosis causes blurred vision, loss of bladder and bowel control, as well as difficulty walking.  What may add to the confusion is that one third of multiple sclerosis patients have a positive ANA test.  Brain imaging and spinal fluid evaluations usually help differentiate multiple sclerosis from systemic lupus."

The information is a little outdated.  The book I have was published in 1995, but has lots of good information.  He may have revised the book for a newer edition-- I haven't checked.  It is a really good book, though, and I highly recommend it.

I feel for you.  I know how difficult this must be.  I do think the LP would be useful.  They are expensive tests.  I don't remember the cost, but I had to pay $700 with insurance, but I had my LP in the hospital (some do it in the doctor's office, so the price would be less).  

Deb

[Forgetfullkaykay]

HI Deb -
thanks for the reply!  
yes, well, they say I have secondary Sjorgens - secondary to lupus that is.  (my eyes and mouth are super dry except during those migranes)   I don't have the specific biomarkers for sjorgens but I do have specific markers for Lupus.  My ANA and those specific markers were low, I think the ANA was also 1:160, but I don't remember - it was just barely high.

The first time I saw the Neuro he said all of my symptoms could be explained by Lupus, the second time I saw him he said they could be explained by Lupus but it is unlikely.  I was a bit stunned because I thought we had this all figured out and I didn't think quick enough to ask more questions and now it's been eating away at me.

Antiphospholip antibodies negitive, no LP - is that a spinal test for spots, for MS?  What does that cost?  Maybe I should press for it.  

Neuro is obviously not worried about me.  I wish I could not worry too.

thanks for all the input, Deb.  It's so confusing.  

Do MS patients often come up with positive ANA, or is that unusual?

[Deb61]

Most, if not all of the symptoms you've listed can be attributed to lupus.  This doesn't mean you can't have both MS and lupus, though.  Having the diagnosis of lupus does complicate the picture.  Usually, neuros will order ANA tests, etc. to rule out other diseases that mimic MS like lupus and Sjogren's.  

Have you been tested for Sjogren's?  It often goes hand-in-hand with lupus and can cause white matter lesions to show up on our MRI of your brain; however, it will cause lack of tearing in your eyes, not more of it . . .   Antiphospholip antibodies (which can also go along with lupus or by itself)  can also cause lesions.   Lupus can cause white matter lesions, too, though . . .

What makes this complicated is that lupus can affect the CNS.  CNS lupus can mimic lupus.  Was your ANA really high?   Have you had an LP?  Sometimes this can point to the cause of the CNS issues.  Very high antibodies probably suggest lupus or Sjogren's.  That is the extent of what I know.  Since you have CNS issues, I would see a neurologist if you haven't already done so.  This person would sift through all of your symptoms, history, tests, etc. and determine the cause of your CNS symptoms.

Your neurologist can often tell by looking at the white matter lesions if they are demyelinating or not  Demyelinating lesions are not caused by infarct or ischemic vessel issues.  They look different--how I don't know.  Also, in MS there are sometimes lesions in certain locations in the brain that don't usually occur in lupus.  

For a long time, I thought I had lupus, but was shocked later on to be diagnosed instead with MS.  I've been to multiple rheumatologists.  I have a positive ANA but it is low in titer.  I believe it is is 1:160.  Can't remember.  I do have the hallmark MS lesions around the corpus callosum.  This is probably what gave the biggest clue that it was MS.  I've also had an LP.  Don't know the results.  

Hopefully you're seeing a neurologist.  CNS lupus is nothing to mess around with, but is a common happening in people with lupus--50-60% according to the article link I'll attach.

http://rheumatology.oxfordjournals.org/content/44/4/434.full

Deb