michelle_rt
06-08-2001, 02:42 AM
I have been tested many times for RA, and connective tissue disease, especially lupus. Mostly, the tests come out normal, and I feel my symptoms and complaints are then dismissed. I know I am not feeling right, and I go through these flare ups of not feeling good. I have been not feeling well since my son was born 18 months ago, when I flared up with these vague symtoms, but seem to get no answer for other than "mild FMS" I would like to share my symptoms and test results. I have a doctor appt in few weeks, what should I be asking my doctor, what should he be doing for me? what if he says nothing is wrong because my ana test is normal?
Recent blood tests
ANA normal, always normal
sed rate-elavated for the first time, in past-normal
White Blood Count-low this time, in the past, low results and normal results
Red Blood Count, normal this time, in past had severe anemia once
mean corpuscular hemoglobin(mch) always high, though MCV and MCHC are always normal
total protein,of blood- first time test was ordered-elavated
albumin-first time ordered, in normal range, but at the high end
complement tests, always normal
urine test-many epithelial cells, and bacteria, some WBC and RBC, and this has happened in past
frequent Urinary tract infections, during pregnancy had protein in urine
kidney stone-once
rosacea
dry skin
weird rashes on body, raised bumpy, once had a perfectly round rash
nasal ulcer during pregnancy and now, that won't heal
painful mouth ulcers, sore tongue, irratated gums and tongue
sunlight bothers my eyes, but not so much my skin
episcleritis once and conjuctivitis frequently
painful muscles and joints,(worse in morning, then lets up, then as day goes on, gets worse again) aches, extreme fatigue, shortness of breath when doing daily walk
unexplained weight gain last summer over several months, that I can't lose
mitral valve prolapse
arthritis in one joint since teen years
Recent blood tests
ANA normal, always normal
sed rate-elavated for the first time, in past-normal
White Blood Count-low this time, in the past, low results and normal results
Red Blood Count, normal this time, in past had severe anemia once
mean corpuscular hemoglobin(mch) always high, though MCV and MCHC are always normal
total protein,of blood- first time test was ordered-elavated
albumin-first time ordered, in normal range, but at the high end
complement tests, always normal
urine test-many epithelial cells, and bacteria, some WBC and RBC, and this has happened in past
frequent Urinary tract infections, during pregnancy had protein in urine
kidney stone-once
rosacea
dry skin
weird rashes on body, raised bumpy, once had a perfectly round rash
nasal ulcer during pregnancy and now, that won't heal
painful mouth ulcers, sore tongue, irratated gums and tongue
sunlight bothers my eyes, but not so much my skin
episcleritis once and conjuctivitis frequently
painful muscles and joints,(worse in morning, then lets up, then as day goes on, gets worse again) aches, extreme fatigue, shortness of breath when doing daily walk
unexplained weight gain last summer over several months, that I can't lose
mitral valve prolapse
arthritis in one joint since teen years
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SailormoonK
06-08-2001, 11:21 AM
I have had many similar problems, my advice is to find a rheumetologist and try that way. also ask your doctor to run an anti dna anti sm and to look for antiphlospoid (i spelled it wrong) problems. sometimes they dont look at everything and miss the bigger picture. also i would advise you to ask for X-rays on the joints that are painful to see if you have another form of arthritis. i am slowly learning. there are others here who know more. another thought, take someone with you who knows what is happening and can tell the doctor it is happening. sometimes a woman is considered to have a mental problem before they really believe it is physical- especially after a baby. and get a second opinion. always get a second opinion and keep getting one until someone listens and helps you.
SusanM
06-11-2001, 02:19 PM
I have a fifteen month old and have never felt really well since I had her (even before, but worse since she was born). I have had positive ANA tests (almost always positive during last 4 or so years) yet my problems are often dismissed as well. I have read so many stories on the internet of people who did not feel well for a long time before they ever were diagnosed. Many complain that they were treated badly by medical professionals, and were often offered antidepressants (as I have been). I'll never forget one woman's story about when her hair was breaking off in patches about an inch from her scalp. when she showed her doctor he asked if she had cut it that way. (I've read this is sometimes a symptom of Lupus known as Lupus hair) When I complained that my hair was falling out all over I was told not to wash it so vigorously. on and on it goes. I suffered from postpartem thyroiditis with very high antithyroid antibodies, and my iron was low. I'm sure this didn't help matters, but my thyroid level is now normal and I still feel like ****. In addition to the things you are looking into it might be a good idea to check your thyroid. My thyroid problem is an autoimmune problem, and autoimmune thyroid problems often accompany other autoimmune illnesses. Good luck. Susan
meflynn
06-29-2001, 06:42 PM
I can relate to these posts... I am 42 and a Medical Social Worker, licensed Therapist and and PHD Psych. student. I have similiar symptoms to yours and after years of trying to get a diagnosis, have the diagnosis of UCTD - Unspecified Connective Tissue Disorder. I am under the care of a very sympathetic Rheumatologist from Emory (Atlanta).He suspects I have ANA negative Lupus - and says eventually, my ANA tests will be positive...I have a tiny lyphocyte count and some blood in my urine at every test - and all during my pregnancy. I had toxemia during my pregnancy - which I now suspect as being Lupus related. Anyway, my Doctor noticed my red face at our first appointment and saw my mouth full of odd sores. I am fatigued on and off - but can go many months with loads of energy. Wellbutrin SR 100 mgs. per day has helped me with energy and focus this past year. I have some vague nervous system symptoms on and off and have had episodic "opthalmic migraines" - where I get flashes of lights in my vision and experience transient loss of vision in one eye. These visual disturbances happened to me as a teen - and then didn't happen again until after the birth of my first son - when I was 34. I went over twenty years with no visual problems and then had several of these "attacks" in my mid 30's. I saw an Optho-Neurologist who tested me for MS and other things and all of the tests came back fine. At the time of these visual problems, I also had some numbness in my left hand and leg tingling on and off for a few weeks. This luckily has all disappeared again and has not come back for many years. I think these episodes must be related to Lupus and the peripheral nervous system. I may have been having small strokes at the time - I kept telling all of the Doctors my hand was numb and my leg was tingling - they wanted me to see a Psychiatrist at that time. It was very scary and scary to this day to think about standing and holding my baby in my arms in a room of of Doctors and Nurses and telling them my hand was numb and my leg was tingling and they never tested me for a stroke or Lupus or anything. They just told me I was a stressed out and tired new mother. Finally, I snuck my way into a referral with this great Rheumatologist from Emory who listened to me rattle off every symptom I've ever had...and he said from day one, I know you have a connective tissue disorder and I think it's Lupus. When I get symptoms - which for me now are fatigue, red rashes and odd aches, he treats me with a steroid dose pack and Celebrex. I can get a one days notice appointment with this Doctor and feel well cared for. I currently have mouth/teeth/gum burning and pain and saw a Dentist. He said my teeth/gums were fine. he said I might have Facial Neuralgia - which is a flaring of the primary facial nerve. It's been very painful - but the one week of steroids has gotten me through. Do I sound like a patient who would benefit from Plaquenal? Thanks for reading my rattling and any response you might have.
Ann S
06-30-2001, 02:51 PM
meflynn,
It's hard to say if you'd benefit from the Plaquenil, it's used for so many AI disorders to stop the progression of the disease. I just assumed it was for the joint problems. One thing though, I would make sure to discuss your previous vission problems with the Rheumy before starting it, cause one of the bad side effects is that it may affect the eyes.
I'm curious as to what your doctor thinks the blood in the urine is from. My last 3 tests have shown a trace of it in mine. Do you know if that could be referred to as osmolality? On my urine test that showed high too. My dr. said to keep checking the blood thing, but didn't think it was related to any of my AI dx's. My lymphocytes were 1.62 on my last test. Normal Range is 0.9-2.9.
What kind of steroids are you taking. Are these on a regular basis or just during flares?
Sorry my response was all questions and no answers! Hopefully, between all of us we can piece together a better understanding of it all. Thanks, Ann
It's hard to say if you'd benefit from the Plaquenil, it's used for so many AI disorders to stop the progression of the disease. I just assumed it was for the joint problems. One thing though, I would make sure to discuss your previous vission problems with the Rheumy before starting it, cause one of the bad side effects is that it may affect the eyes.
I'm curious as to what your doctor thinks the blood in the urine is from. My last 3 tests have shown a trace of it in mine. Do you know if that could be referred to as osmolality? On my urine test that showed high too. My dr. said to keep checking the blood thing, but didn't think it was related to any of my AI dx's. My lymphocytes were 1.62 on my last test. Normal Range is 0.9-2.9.
What kind of steroids are you taking. Are these on a regular basis or just during flares?
Sorry my response was all questions and no answers! Hopefully, between all of us we can piece together a better understanding of it all. Thanks, Ann
meflynn
07-01-2001, 12:30 AM
Hi Ann and all - I have been off of steroids (thankfully!!) the last few years. I occasionally have had to take a dose pack for a flare. I take Celebrex as needed and am just now finishing a six day dose pack for a very BIZARRE symptom... this happened to me a few years ago too... I get excruciating facial pains in my left jaw/gums/teeth/cheek. When this first happened a few years ago, I ran to the Dentist who did an awful thing on me called gum scraping/root cleaning. Of course when all of the novocaine wore off, I still had all of the original pain - as nothing was wrong with my mouth dental wise. I saw my Rheumatologist who said that I was having a flare in one of the primary nerves of the face. Luckily, this has only happened to me twice, but it is very painful. At least this time, I knew nothing was wrong with my teeth/gums and got to the right person - the Rheumatologist and not a Dentist. I am sure this flaring of nerves in my face is somehow related to my UCTD/Lupus. My Rheumatologist is too. When I was first diagnosed three or four years ago, I was on steroids for several months. I gained a lot of weight. I've been taking Wellbutrin SR the past year - and it gives me a lot of energy and I've lost 30 pounds. I'm walking a few miles each day. My Lupus and/or UCTD seems to flare in the spring/summer months. I mostly get pains in my joints/tendons and sores in my mouth/nose, lower leg rashes and fatigue/fevers. I've had a few positive ANA readings - always low titer, speckled pattern. I almost always have an elevated sed rate and some traces of blood in my urine. I did have toxemia during my pregnancy - with really high blood pressure and protein in my urine. In fact, it was after the birth of my first son, I became so ill with fatigue, fevers, odd sores, aches...I am in the medical field and diagnosed myself. My Internist told me to my face there was nothing wrong with me and that I was a stressed out new Mom. I knew I was really sick and talked my way into an appointment (around the backs of the managed care gatekeepers) with a Rheumatologist. This kind man listened to me rattle off every weird symptom I've ever had and noticed off the bat my red face... he told me I was sick and smart to keep pressing for a diagnosis. If any of you readers are in the Atlanta area, I have a great Rheumatologist - if you need a referral. He gives me all of the time I need, and has a great manner. He says most of his Lupus patients have seen Doctors for an average of six years prior to getting a proper diagnosis. I think this is so sad. I am feeling better from my latest flare and hope to be out walking again next week. This facial nerve thing was terrible!