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Hey everyone,
I posted here a while back, I was misdiagnosed with Ulcerative Colitis. After the misdiagnosis, my GI made recommendation that I be referred to a Rhrumatologist, I don't see him until March. Since seeing my GI in September, he's taken me off of my meds (2,500mg of anti-inflammatory more specific to the digestive system) but I feel even worse now!
I switched family doctors not to long ago, mine felt that it "must be stress and anxiety" that's making me feel so bad because surely, if there was something wrong with me he would have found it, kind of a rotten position to take I thought. My new GP did some blood work. She feels that there is something wrong with my immune system. I have many symptoms similar to Lupus, I only know the similarities because my cousin is and has been for many years very ill with it. She did ANA, Ro factor, ESR, I can't remember the last one.
I haven't heard back from her, it's been about a week. My old GP said that my blood work has always come back within acceptable ranges and I assume she has found this as well.
I am so frusterated, I can't imagine my blood work being fine when I feel so bad! I even went when while I was feeling really crappy. What is the point of seeing a Rhrumatologist, if there seems to be nothing wrong with my lab results? Is it even possible to have Lupus without supporting blood work?
Thanks for listing.....

Devony
Thanks so much for your replies, it is amazing how taking with people who know what you are going through makes it easier.

My new doctor said that "the worst mistake a doctor can make is assume nothing is wrong or that stress is the underlying factor when they can't find the cause". When my Dad was diagnosed with cancer I got really sick, it felt like I got the flu and it didn't ever really go away. My Dad is now three years cancer free, he got better, I did not that should have had some impact on my GP's conclusion of stress being the culprit. I signed a consent to transfer my file to my new doctor from my previous doctor. She may be waiting to assess my results with my recent health records. Regardless, I am taking your good advise and will get a copy of my blood work.

I haven't been diagnosed with Lupus. Thinking back to my medical history, I started having problems as far back as 1997. Started with simple things like migrane headaches and swollen glands. Then came a ton of bowel problems due to inflammation, flu like symptoms, swollen/red/painful joints, muscle pain, hair loss, sore throats, chest pain, facial rashes (not a butterfly rash), extreme photosensitivity, poor circulation to fingers and toes, migrane headaches far more extreme than before and fatigue that doesn't seem to stop. I developed a lot of food sensitivities over these last couple of years. The newest things are my tongue feels burnt often and I am getting these tiny circular things on my arms that resemble a bruises. My body tells me when I need to sleep and I am only 29 years old!

Thanks again.

Devony
Hi Vee, I remeber you telling me how long it took you to get diagnosed, that is really scary. Who finally diagnosed you? What is a "subset" of Lupus, does this type have organ involvement? You must have been so relieved when they finally figured it out.

I talked to my doctor's office today, it turns out that she has only received part of my blood work back but has not yet gotten the results from my ANA and the other more specific tests she ran.

Another thing I forgot to mention is I have night sweats often. They can happen more than one time in one night, I also don't sleep well. I feel sicker around the time of my menstral cycle, PMS has a whole new meaning to me (and my husband, lol).

The spots on my arms are only about 1/2 cm. They've always been on my right arm. They have a darker, redish border, inside they look slightly bruised kind of a pale yellowish colour. I haven't had many but they last about a week before they go away, they are completely painless. What did your doctor tell you your were? Where do you get them? It seems I have a rash on my face most of the time, red blotches, and have had one on my chest for a long time now that I have never brought up with my doctor, that one is raised and sometimes red, it comes and goes.

Shawnee, that is my biggest fear is to be told I have Fibromayalgia or Chronic Fatigue Syndrome, it seems that there is very little to treat these and it seems that these types of illnessess are somehow taken less seriously. I was on Prednisone to bring my symptoms under control about two years ago, it also did wonders for me.

Leslie, you have MS and are being tested for Lupus, oh my gosh. My thoughts are with you.
Dear Dads1stGirl,

I *think* the big-practice rheumies have access to more sophisticated testing, better labs, and other specialists. I can't prove this, though...

I'd gotten nowhere after years of bloodwork, skin biopsies, and other tests (incl. kidney function). One big thing the city rheumie did differently was to write down immediately his first impressions, what he'd be testing for. He showed this to me right off the bat. Very "out-front" about his thoughts. He also asked for a lifelong medical history---and actually read it and asked questions. He knew exactly what he was looking for, in other words.

Then he sent me to a skin specialist, a dermie who does his OWN labwork, called a dermatopathologist. Weirdly, this 2nd dr. had my old skin samples shipped to him, to RETEST. Odd but very useful, it turned out---this gave him 4 yr. skin history for me, to add to the new skin punch. This saved him and me both a LOT of time, as he got *multiple* positive results right away. I know he did immunofluorescent testing, which I had not seen mentioned on my old biopsy reports.

Maybe the biggest advantage is simply the law of large numbers, as the phrase goes. These drs. have seen a LOT of lupus, in all its various guises. Both of my specialists seemed pretty sure what they were seeing two seconds into my first visits to them. No puzzled faces, no confused looks.

Honestly, I think you'd be better off seeing a specialist (rheumie or dermie) than a GP---given that whatever is doing this is not showing up in the bloodwork. Keep us posted when you can, OK? In the meantime, best wishes! Vee
I can't really add anything new to this and VeeJ has pretty much said it all. I am going to add my little story anyway just to hopefully add weight and strength to Vee and others. I have had strange things happen ever since I was a teen. They range from severe GI pain for no good reason that resulted in major surgery. They found nothing by the way. To bouts of pleurisy and pheumonia out of the blue. Nothing lasted more than a few days to a few months at a time and when they went away I was extremely healthy for years at a time. In case U don't know, I am 54, so I have had weird things for some time now.

Last Nov., week before Thanksgiving 2003, my joints began to swell and be hot and painful. Especially lower body joints but my shoulders and hands were affected too, all be it to a much lessor degree. No one had any answers. Then one day I ran into an old aquaintance who asked how long I had Lupus. I said what are you talking about and she mentioned the bright pink rash on my arms. "I have had this for almost 30 years." Over the years it has arrived on my neck, chest, and legs as well. I have never had the typical maylar rash on my face though. A couple of times it was pinkish but not every bright.

After this woman mentioned Lupus I called my Dr. She ran blood for autoimmune disorders and came back with a low pos. ANA, speckled pattern. I have also had many UTIs

Had severe allergic reaction in Sept to a mesquito bite so I was sent to a Rheumatologist. By this time, except for weakness in my legs, I felt better. He looked at my arms and said, yep, I think you have scle. The arms definitely look Loopy. He ran his own blood work. This was 5 1/2 months after the first blood tests were done. Guess what, everything was so normal even I wondered if I had made it all up. The ANA test was neg, homogeous pattern this time around. Dr. still believes I have Lupus and skin biopsies are scheduled. I have other symptoms as well, but they are not severe.

I said all of that just to reiterate what has already been said. Don't give up and by all means be seen by a rheumatologist, preferably one who has experience with Lupus and not just rheumatoid arthritis. Have the rash on your arms checked out. For years Dr.s told me mine was a hormone deficency. Imagine, almost 30 years and quite possible before that. No wonder we feel stress.

Oh, one other thing I have found. If you carry a self addressed, stamped envelope all the time, when tests are done you get better responses to asking if you can be sent copies of the results or reports if you give them the envelope ready to mail.

Good luck to you and I hope you feel better soon
May God Bless and Keep You
Patience 50 :wave:





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