CONNECTIVE TISSUE DISORDER...NOT LUPUS?

I was rx'ed with Anemia of Chronic Disease about 2 weeks ago. I have had chills enough to wear 3 shirts and 2 jackets at a time in South Florida, itching, fatigue, a strange deep ache (most likely malaise). My blood test, besides showing anemia, had elevated sed rate (Twice the guidleine #) and elevated C-RP (again, twice the guidline #). I also have psoriatic arthritis.

I went to the hemotologist who said I have a "ton of arthritis". I already knew that because I suffer from some major back problems and arthritis is one of the problems. But 2 Friday's ago, after a very tough day for me, I had the classic Lupus mask with the red blotches under the eyes and on the nose bridge.

The hemotologist told me to come in yesterday instead of January. He did not take more blood but said that under a microscope, my red cells were not shaped normally, but he felt that was due to the arthritis.

He felt that I did not have Lupus, but perhaps another auto-immune and said I have a connective tissue disorder.

Now, my ANA WAS negative, but there are subsets of Lupus that have negative ANA.

He now wants me to have a CT scan of chest and abdomen.

My question is about the misshaped red cells. He quickly blew it off as from the arthritis. Does that sound right? He also felt that I do not have a blood disorder and did not want to do a bone marrow biopsy.

Alan

Post Edited (wolftrades) : 12/20/2007 9:24:24 AM (GMT-7)

Hi Alan, Well . . . you and I fall in a similar category. No blood work to confirm Lupus, but many of symptoms. I have had some docs say that I have Lupus and some that say not. The two rheumies say no . . . the two derms said yes. Bottom line (for me) is that the doctor IS treating my connective tissue disease. I'm actually relieved to keep the word Lupus out of my medical files. Sorry you are feeling so frustrated. Do you think this doctor is treating your issues well??? Blessings!

Alan, it can be so frustrating to be in that limbo land of diagnosis. All of these illnesses are so closely related and share so many symptoms that it can be really hard to get a concrete diagnosis. Like Rosie said, the most important thing is that your symptoms are being treated. On paper, my rheumy has written undifferentiated connective tissue disease, but in person he tells me I have lupus (he has UCTD on my charet because it's better for insurance purposes). A lot of these illnesses are treated with similar meds. I hope your doc can get to the bottom of what's going on soon. Like Rosie said, you can also get another opinion if you aren't comfortable with this doc. That feeling of malaise and deep pain you described is something I get when I am feeling really sick. Hang in there and take care.

Alan,

It sounds like you have some type of connective tissue disorder.  I have MCTD (lupus, scleroderma and polymyositis) and had many, many tests before diagnosis.  Bone marrow biopsy was one of them to eliminate cancer or a bone disease.  My early symptoms were mild anemia and low platelets.  Later on an elevated sed rate and other test indicators but it was obvious by then that I had lupus at the very least.

Diagnosis of any of these is based on many thing...symptoms, tests and no 2 cases are alike in symptoms or response to treatment.

Keep a list of all symptoms even if they do not seem related.  If you are seeing more than one doctor make sure each of them sees all the test results so they are not working at cross purposes. 

Not sure about your question on red blood cells but I have seen information on that...just don't remember what it was.  Do a google search and go on both the LFA (Lupus Foundation) site and the TMA (Myositis Assoc) site for information.

Hope you can get some answers soon.  It can be frustrating but these are complicated and highly individual diseases so it is not easy even for a good doctor.

Bill

Alan, I have to ask if you are on Humira/Enbrel/any TNF blocking medication. I have serious back issues and no one is exactly sure what they are caused by. What we do know is I have psoriasis, rheumetoid arthritis, and lupus (as well as many other conditions). I am ANA negative but have more than enough criteria. See a rheumetologist ASAP psoriatic arthritis can destroy your spine and other joints just as bad as rheumetoid can and sometimes a lot faster. You need the PA controlled ASAP and it does not sound like it is being adequately treated. A rhemetologist could treat it and would give you much better meds. My RA is controlled by my meds and the spinal issues are significantly helped by the Enbrel injection I take every single week. I would see a second hemetologist for another opinion about your red blood cells. Some diseases attack red blood cells that have nothing to do with cancer. It sounds like you may have a second autoimmune condition- please be aware psoriasis and psoriatic arthritis are autoimmune conditions. Having one makes you more likely to have another AI disease. I have no clue what the increased risk it but if you look at people's signatures here you will find many of us have multiple diseases. I think your being a man may make the hemetologist dismiss lupus and similar conditions more quickly simply because it is more common in women. Yet, I have male friends with lupus so it isn't impossible. Be aware the ANA can fluctuate by day which means it isn't always accurate and many rheumetologists are beginning to dismiss it as a test because of how unreliable it is. There are better ways to judge lupus than the ANA. I was dismissed for over a decade because of my negative ANA- I had 2 family members die of kidney failure from untreated lupus for the same reason. Another family member died because she got a clot after a surgery and they said it was likely because her lupus was not controlled. Today they would have checked her for anti-phospholipid antibodies and the lupus anti-coglutent which she may have had.

Never take a doctor blowing off something that feels important to you. Remember they work for you and you have the right to fire them if they don't pay attention or dismiss symptoms. Make calls now for second and third opinions and find a rheumetologist. You need one even if you don't have lupus. I wish you luck.

I hate to say this but waiting to treat could cause you to have even more damage to your spine and joints. I have no clue on weight loss. I would worry more about why no one is treating your other problems because treatment might be the best way to sort out what is exactly wrong. As symptoms come under control which problem is caused by what and which symptoms don't clear up will let them know what may be wrong. It will also allow them to further investigate what is left and rule things out. I know this sounds strange but treating the symptoms could save your life.

Greetings Alan! Rosie and Redrose and Bill give excellent advice. I agree that you need to see a rhuemy very, very soon. We do not always sound so bossy on this site, please know that. We just know from experience that it is harder to get things under control if you wait too long. Then, in the meantime, this disease has the potential to do serious damage to your joints or to other organs.

Prayers to you!

Sorry you are feeling so pooryly Alan. Most Lupus related pain is inflammation driven. So, anti-inflammatories are our best friend. A lot of us depend heavily on OTC meds like Ibuprofen. The big guns rx med is prednison, which does a great job with the inflammation, but has side effects when taken in large doses or when taken long term. If your pain is back related (like pinched nerves) you might need to seek help from a spine doctor who can help you do something to free the trapped nerves. Ultimately, it is necessary to determine the source of the pain to properly treat it. Meanwhile . . . until you get some help from your doc, many of us have had some significant relief from things as simple as using an electric blanket at night. When we improve the quality of our sleep we find that a good part of our symptoms are better managed during the day . . . or at least somewhat improved. So do anything you can to sleep well and to gain restorative sleep. Keep us posted. Blessings!

I hate to say this because it is going to come out sounding wrong but someone needs to. It is time to stop waiting for everything to be perfect before you see a rheumy. If you keep waiting for this test or that record you are going to end up waiting forever and by the time you finally get into a rheumy you will end up in trouble so bad you are close to death or the damage is beyond help and you will wish you were dead. I know that sounded simply awful but darn it all my brain doesn't work the way it did a few years ago when I could say everything perfect. When I first saw my rheumy all I had was the most complete history I could recall- no medical records- and a few pictures of various rashes and such. I also had the physically apparent symptoms. My records had been requested 10 times from everywhere and non had ever been received. Yet based on my history, the pictures, and the visible symptoms that day I walked out with lab and Xray orders, a diagnosis, and a treatment plan. I gave up waiting for all the tests and records because I couldn't take the pain anymore, add to that I felt like I was dying- literally not pain related just felt so horrible and felt my strength and will to fight slipping further and further each day and I am darned lucky I went when I did. As it turns out I can awfully close to dying that fall- nearly 6 months after treatment began and had my rheumy not told me which test to request I would have died from a burst gallbladder. It was a long hard fight to get my lupus under control, my RA managed, and a couple of my other health issues bearable. I will likely always be weaker than I would have been if treated sooner, I will always have to deal with the damage to my spine and joints that happened before treatment was started and while we waited for it to begin working, I will always have neurological issues as a result of the damage done to that system too. I do not want someone else to have to suffer what I have, I do not want to see someone else wait to be treated because they think all the tests and all the background have to be in place before they see a rheumy. Make the appointment for a soon as you can get in. If you were close enough I would recommend my rheumy.

Heck she is treating my husband- he had 2 blood tests and a very sketchy history as well as 1 picture when he first saw her. Initially we thought his problem to be episodic- occurring 3-4 times a year but apparently he had been hiding symptoms and problems because he finally admitted everything during his last visit and she suspects he may have the early stages of RA or another rheumetological condition. No one had run any xrays or special tests beyond a SED and ANA- his ANA was very low positive. She re-ran it and it came back negative. The SED was negative despite the fact his hands were 4 times their normal size, red, hot, and curled like claws yet unable to move more than a few centimeters when it was drawn. She did not re-run the SED. Now he needs to have an RF and a third ANA done as soon as he can get into the lab. He thought he was just getting old and although he occasionally told his PCP about the symptoms no one bothered to look closer. You don't need a huge log of tests or a precise history for a rheumetologist to be able to figure out what is happening. You just need to let them get started.

Please make an appointment now, before the damage is so bad there is nothing to be done about it because that is what psoriatic arthritis does- it completely destroys the joints and can do the same to the spine. Once the damage is done nothing can undo it. Often even a joint replacement is impossible because of the damage to the surrounding bones and tissues. You do not want to wait until it is too late. I would hate to see someone else suffer needlessly I lost family members to lack of treatment and nearly died myself. I have watched a friend lose parts of her fingers from poorly controlled raynauds. I have seen so much suffering and want to try and help others spare themselves the same or worse.

Mandy,

Hi glad you are posting. I also have chronic migraines due to autoimmune diseases. I also take neurontin and topamax. Ask you dr. if he thinks or will let you do a trial by adding verapamil. Once we added this to my "arsenal" the headaches were under control. I wish you the best in diminishing your headaches.

emmie

I have anemia of chronic disease, psoriatric arthritis, an elevated sed rate and C-rp. itching, dropped 10 pounds in about 3 weeks, slight loss of appetite.

CT scan revealed mildly enlarged lymph node 1X1 cm on right inguinal region along witha mildly enlarged thymus (2X1 cm) and top normal sized lumph nodes in pretracheal and paraaortic region.

Spleen, at 12.6 cm, is mildly enlarged.

Is a bone marrow biopsy called for next?
What IS next?
Could this be lymphoma?

Thanks
Alan

UPDATE:

CT Scan of chest revealed mildly enlarged spleen, mildly enlarged thymus and a mildly enlarged lynph node in groin. Visit with hemotologist today to go over scan. First of all, he threw out the lymph node because at 1 cm, it was at the top of normal range according to him.

He didn't say anything about the thymus and spleen and said I should see him in 3 months.

What was interesting was that my red cells were up, but my platelets were down. I've had some bloody nose issues too, this past week.

Now correct me if I'm wrong, but doesn't enlarged spleen and low platelets go with lupus?

Alan

As everyone keeps pointing out all of these conective tissue disorders have so much overlap. I have three of the eleven characteristics for lupus, I test positive for many of the fibro points but not enough for a diagnosis, I have many symptoms of chronic fatigue but not enough for a diagnosis. I have RA. The treatment for many of these disorders is often similar though not the same. One of the keys is going to a Rhuemy and letting him/her order the tests they think are neccessary and start treatment. Exact diagnosis often comes later.