Positive ANA, Ulcerative Colitis and negative Lupus testing

I am getting increasingly frustrated with doctors because NOT one can tell me what is wrong.  I know you guys aren't doctors but I am hoping some of you more experienced members can tell me if I am on the right track or even if you can relate.

I've had Ulcerative Colitis for 19 years.  A stubborn case and right now I am on the immune suppressor Mercaptopurine among other medications.  I have had many odd symptoms over the years that it is hard to put down in a summary but my primary tested me a few years ago and I had a positive ANA.  She referred me over to a Rheumatologist who was a total jerk to me and I refused to go back to him.  So I stopped pursuing my symptoms and trying to find a diagnosis.  But it got to the point where I can't ignore it any longer.

I was hospitalized this past December from my UC but I also had a full body rash.  In fact, I have had full body rashes for the past couple of years.  Very random but they are mostly on my legs, arms and torso.  I've been tested for everything under the sun as in allergies and I have none.  I have been getting small blisters in random spots.  I also have Raynaud's for about 8 years, chronic insomnia, muscle weakness, fatigue, headaches, foot cramps, tingling in my feet, nose sores, vertigo (only one severe episode when I was sleeping), low blood pressure which caused me to black out, pebbling in my palms when wet but not when dry, joint pain especially my knees and hands - knuckles get red and fingers swell, the sun makes me feel weak, peri-oral dermatitis, Derm just diagnosed me with Rosacea but I don't get the pimples associated with it - nose gets the red butterfly rash when exposed to triggers (cold, heat, caffeine, alcohol etc),  SI joint pain, mild RLS, a short lived episode of blood in my urine with no sign of a UTI.  I also have Dry Eye and the last Schrimer's test showed it at 3/3 and my eyes are light sensitive.

I have had MRI's, CT scans, EMG's, Stress test with Echo, Tilt Table test and multiple blood tests - you name I've probably have had it done...all negative.  I even did acupuncture!

I am seeing a new Rheumy in a week and I seriously think that this is Lupus - not that I want it but it would be nice to finally have a diagnosis after suffering for many years. Do you guys think I am on the right track in pursuing the Lupus angle?  Btw, the Mercaptopurine that I am on can not get me into a therapeutic range that my body needs because if I go higher it affects my liver functions.  I'm so sorry this is a long post but I am getting very frustrated at this point that it's hard to put down everything in a sentence or two.

[Suda]

Dear Yankeerose1970,

I just sent this same diatribe to WeakandFalling.  I hope it may help you a bit.

For about a year and a half I was told I "only had Fibroymyalgia" as if that weren't bad enough, because it actually is horrible, the way you feel.  And it still is for me.

Anyway, about a year and a half later I had a really bad time breathing and finally went to the ER.  At this time I worked for doctors, believe it or not, and the one on call that day sent me home saying I had pneumonia, and to stay in bed and rest for three days.

I went back to work after three days (remember I was working for a group of physicians at this time) and they all said "Oh, you look really much, much better", to which I replied, "Well I really don't feel at all much, much better."

The very next weekend I was back in the ER and thankfully another one of the doctors I worked for was on call and she took one look at me and sent me straight up to the ICU and called a thoracic (spell?) surgeon who proceeded to tell me that I needed an operation to relieve the fluids around my heart and lungs, like yesterday.

Soooooo,  that's what happened, I had a pericardial window done on me.  After I was out of the ICU and into a regular room, they sent in a great Rheumatologist and he said "Well, it's official, you have lupus, and not the "mild" type either, but the systemic one."

Like you, I didn't want this disease, but it's better to know one's enemies than not.  I do also have fibromyalgia as well, so they weren't wrong on that score.

Long, long, story, but trying to be short and informative; I had tests run over and over and nothing showed that I had lupus, no tests at all even suggested such a thing.  It's a very difficult disease to diagnose.  With me, I'd go into my new Rheumy's office feeling totally horrible, and the tests would say I was doing better.  Then other times I would go in and I'd feel half way decent, yet on the next visit I'd be told that my blood work showed that I was having a flare on my last visit.

As far as lupus and I go, I feel like it runs and hides quite a bit.  Until the pericardial window and all the tests were sky high, and some bottoming out, I'd probably never have been diagnosed.

So, try to keep in mind that I've truly found that with lupus, it can hide, and hide for quite some time.  Yet, in the meantime your body feels like you've been beaten all over with a baseball bat, well that's lupus and fibromyalgia.  Then, boom, suddenly it shows up, but never when you'd expect it too, like when you're feeling like total caca!!!

Good Luck, with your journey, I know how difficult and frustrating it all can be.  Just also keep in mind that you and you alone are the only one who knows your own body.  Nobody else has a clue.

Again, Good Luck,

Suda

[yankeerose1970]

Thank you so much for your reply.  Yes, I heard that Lupus is the great imitator, can hide and take years to make a diagnosis unless something comes along and slaps you and the doctors in the faces.

I am just getting tired of doctors telling me that I am having these problems due to my UC.  But I find it funny is that even though I've had UC for 19 years, other then the bowel issues associated with it, the other symptoms are fairly new.  But like you said, I know my own body and hopefully this new rheumy will be able to help me.

Thanks again!

[Suda]

Dear Yankeerose1970,

Never, ever forget that you and you alone are absolutely the only expert on your own body.  

I was told by the friends I made when I was working for doctors during my pericardial window to do my best not to resent all the doctors that I'd seen previously who acted as if it was either nothing at all, or better yet, all in my head!!!

For some reason it seemed to me that as a woman I was treated quite a few times as if it was all in my head.  Well, guess what guys, it wasn't!!

Again, you, and you alone must be your strongest advocate!!  Now, having said that I know you may be laughing hysterically right about now because you most likely don't even have the energy of a gnat!  I'm not sure if gnats have a log of energy, or a little.  The way the zap around it seems like they must have a lot of energy, so I'm totally lost as to where exactly that term came from, but I'd like to have some of that energy anyday, anytime.

Best of luck to you, and also best of luck in trying to find out exactly what is wrong with you physically, for you and I know you absolutely have something physically wrong.

Big Hug,

Suda

[skippyzmom]

Your story is so like mine...it took numerous specialists and over 15 years to finally get a fibromyalgia and lupus diagnosis.  My bloodwork was confusing to the doctors but I had so many other symptoms that lupus beame obvious.  It's very frustrating not knowng what you're dealing with and having no official validation.  Just keep at it, as hard as the process may be.  Hang in there...

[yankeerose1970]

LOL - Thanks for the chuckle Suda about the energy of a gnat!  I don't know where that term comes from either because I definitely do not have the energy of a gnat that's for sure!

Skippyzmom - what symptoms were you having that made it apparent that it was Lupus?

I had my appt with my Rheumy.  I really liked him.  He did a bunch of blood work and did an examination.  He pressed on my tender points and I had 17 reactions out of 18.  So if the blood work comes out normal, he is going to rule it as Fibro.  I have a follow up with on April 4th so I will know more then.

Thanks for the replies!