Still confused!

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Red_34
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Date Joined Apr 2004
Total Posts : 23418
   Posted 9/30/2008 11:19 AM (GMT -7)   
I have been blood tested several times for Lupus.  It has always came back negative - which I am grateful for.  The only one that came back positive was the ANCA.  However, I also have Ulcerative Colitis and a positive ANCA is almost always positive in people with UC.  I've went to a Rheumy doc and he did a bunch of blood tests (I have the paper here somewhere and I can't remember the tests) but they came back negative and all within the normal ranges.  But for the past several years, I have had some odd symptoms that one doc will tell me it's one thing and another something else.  I am so darned confused!  I mean I realllllly do not want to have Lupus but all the odd symptoms I am having are pointing in that direction.  But what also confuses me is how do I know where the Uc symtpoms begin and another auto-immune condition ends??? 
 
Btw, I've already read the Lupus Foundation several times.  I already know the symptoms of Lupus but the problem is that while I have some of these symptoms, they can also correspond to me having UC.  And yes, I have brought this up to many many doctors and every one of them has a different explanation - see my confusion???  But I guess the main problem I am having right now are rashes.  I have this horrible rash on my face - it goes from under my nose, my chin and across my lower cheek (jawbone) areas.  My family doc thinks it might be eczema.  I was thinking it could be Rosacea but when I use the meds for Rosacea, it made the rash 10x's worse. So right now I am using a strong steroid cream to reduce the patchiness and itching.  And it helps but when I stop using it, it comes back.  Also, I have been having these horrible headaches in the mornings.  I have 2 herniated discs in my neck and I was thinking that because I slept weird that it was causing me to wake up with headaches.  Which is can be I guess but usually these headaches last all day long.  Another thing that is really bothering me is my ribs.  I have already had a MRI of almost my entire spine.  My thoracic region is fine but then why in the heck does it feel like someone is taking a blow torch to my spine??? When that happens, the pain radiates to my ribs on my back.  Oh and did I mention my eyes??? They are constantly red (not like conjunctivitis red), just sort of bloodshot and they burn sometimes.  I feel like I want to close my eyes all the time.  And yep the docs said it could be from Dry Eye (which is another Uc manifestation) but it only starts to act up when this rash does.  Agh! Ok, sorry for the long post!  I am just so frustrated with doctors, these odd rashes, and all these other little things that keep popping up that I just want to pull my hair out!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 9/30/2008 12:28 PM (GMT -7)   
((((((((( Sherry )))))))))))))

Yes . . . it is such a puzzle, isn't it??

I wonder if it would simplify things if you could identify the symptoms that you would like the doctors to treat.

Sometimes they are still working on the puzzle and they simply treat the symptoms. You do have so much going on. *sigh*

I wonder if any of your doctors would consider starting you on plaquenil. You won't get any immediate results, as it take up to 6 months for it to fully build in your system. But most member in the Lupus and RA forum are on it or have been on it. Majority of us will use it for life. It works on systemic inflammation and may help even your facial rash.

Do your symptoms flare after being in the sun? That's pretty common in lupus. I used to get rashes just from going down to the mailbox. I had to wear long sleeves even in the car and carry an umbrella. More recently, I've not been so sensitive . . . but I think its the plaquenil working as I've been on it for a very long time.

Anyway . . . I hope some of the others have something more enlightened to share with you. I just feel so frustrated for you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23418
   Posted 10/1/2008 8:08 AM (GMT -7)   
Thank you Rosie. Did I happen to mention that I think you are a total sweetheart?? :) I have heat intolerance now but before I started on 6mp, I would get the butterfly rash on my face - but not all the time. It was pretty inconsistant when it would show up. I also got the butterfly rash and sometimes splotchiness on my neck and chest when I had any alcohol (before starting 6mp). Now, I hardly drink anymore (not that I was a big drinker before lol) but when I do, it makes my nose light up like Rudolph. When I am in the sun now, I get an all over creepy feeling - it's hard to describe. But it feels like I just can't be in it - I get super antsy and if I stay in the sun, I start to get dizzy and sweaty. What sort of med is Plaquenil?
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 8:45 AM (GMT -7)   
Your welcome Sherry! (remember? you were there for me too!!)

Plaquenil is an anti-milarial drug that happens to also treat joint stiffness (in arthritis and lupus) and sometimes the skin issues for lupus.

Do you have joint pain?

The sun increases disease activity in many Lupans. The sun rash is another feature . . . but for me, it is an early warning system. For me, the rash precedes disease activity.

But . . . keep in mind that I am not truly a Lupan. I have been diagnosed, then undiagnosed, then a "most probably chron's" diagnoses. But all the while, they want me to continue with the plaquenil. When I do go off the plaq, I end up in a flare.

It is SO frustrating trying to stay ahead of all of this. But it has been really helpful to have a basic knowledge of some these diseases.

When is your next Dr. appointment?

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23418
   Posted 10/1/2008 9:11 AM (GMT -7)   
Yes, I have joint pain. But that can be from my Uc too (see the lines that are crossed between Uc and Lupus??) I don't have arthritis that I know of. None of blood markers showed anything. I don't have any swelling in my joints except occasionally my fingers and that is very mild. I also have Raynauds, the docs don't know the cause of it and I take Norvasc on occasion when my fingers start to go numb - especially in the fall and winter. Now, gotta a question for ya :) Since Lupus is auto immune and me being on an immune suppressing medication - if I was to have Lupus, wouldn't the 6mp stop Lupus (flares) in it's tracks? As for me seeing the doc? Umm which one?? lol I see my primary whenever something is bothering me - I just seen her last week for this rash. But I also see a neurologist and a gastroenterologist and a rheumatologist if I feel I have to - though I really don't like the rheumy doc.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 10/1/2008 9:35 AM (GMT -7)   
Ahhhhhh . . . I wonder if the immuno suppressant is making your ANA go negative. That can and does happen.

Some of the meds work better for the gut and some work better for the joints. Sometimes it depends on where they are released and sometimes they just work differently. But I've never seen 6MP used for Lupus.

The rheumy would be the doctor that would determine if your symptoms are lupus related. But . . .check the link at the end of my sig . . . "Lupus Chapter Locater". Once you find your local chapter, contact them by email or phone and they will send you a list of rheumies in your area who actually specialize in lupus. Not all rheumies are very interested in lupus. If they aren't "into it" you won't get good treatment. Just a thought since you aren't fond of yours. If he/she IS on the list, at least you will have a bit more confidence in seeing him/her.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23418
   Posted 10/1/2008 11:51 AM (GMT -7)   
Thanks Rosie, you're a peach :)
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 10/1/2008 4:51 PM (GMT -7)   
I have never had a positive ANA and I have lupus. Of course, when they started testing me for lupus I was already on Imuran for my Crohn's disease. When they did you testing, did they just do an ANA or did they do an ANA and check for all the specific lupus anitbodies? My anti-dsDNA antibodies are always positive. In fact my rheumy does not even run an ANA anymore because he says there is no point. Just food for thought....
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23418
   Posted 10/2/2008 8:16 AM (GMT -7)   
Ides, I'm not sure which blood test was ran and if they checked for lupus antibodies. Something I can ask my primary about though next time I see her. Sometimes I feel like a ticking time bomb. I know something is wrong but nothing is pointing to a concrete answer. I found that I need to be a bulldog with my health. I'm not typical when it comes to anything - except for having Uc - neither me nor the docs ever had a doubt about that at least. For instance, it took 3 years of me pestering docs to find a cause of my back pain but I finally did find an answer. So I guess I have to do the same with this. Who knows.....maybe it is something totally curable and I am barking up the wrong tree. The coincidences just seeem to be piling up though.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis(?)~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3rd epidural injection 9/4, Neurontin and Skelaxin
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redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/2/2008 3:00 PM (GMT -7)   
The road to a full diagnosis is a long one. My rheumy is convinced we still haven't found my primary disease. Look at my signature and you will see how scary that thought is to me. You need a consult with a really good rheumy not a pcp no matter how wonderful. Sorry, but a really good rheumy would have better luck dxing you.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements

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