Dear Doctor, I began with a "petechiae rash" February 24th accompanied by sore, swollen, and bleeding gums, left flank pain and hematuria. My pcp did STAT bloodwork and I was told everything looked okay but this particular rash must be investigated because it usually does not occur without a reason. I have since then seen a dermatologist who agrees with what my pcp said and they are sending me to a Rheumatologist, my appt. is the 16th of this month. The dermatologist mentioned a few causes of this particular type of rash: Leukemia, Lupus, Scleroderma, Multiple Myeloma or Collagen Vascular Disease. I'm presently beening evaluated for MS but starting to think that since the symptoms of these disease are similiar maybe MS isn't the culprit. The only change in my symptoms since Feb 24th have been easy bruising only on my forearms and thighs. These bruises appear out of nowhere (about the size of an m&m) and then they disappear as mysteriously as they appeared. Also over the last 1 1/2-2 weeks I have had in ulcer in my left nostril and several ulcers on the inside of my lower lip which are finally resolving. Lastly, I started Sunday with a very painful area on my left shoulder that is very tender to touch. There is a spider vein in this exact area that wasn't there before. Now for the last 2 days the same shoulder is aching like a BAD toothache, limited range of motion and some slight swelling. The petechiae rash is still present as well as the gum problems. My questions are: can you have a negative ANA and still run the risk of having Lupus? Does any of the new symptoms (ulcers, shoulder problem and bruises) go along with Lupus, or sound like something totally unrelated?
Just for a little history, I am currently disabled because of arachnoiditis, end-stage DDD (have had 3 lumbar surgeries, bony fusion from L3-S1 and instrumentation at L5-S1 with titanium cages and have been diagnosed as having "a demyelinating disease of the CNS unspecified at this time". I suffer with dibilitating fatigue, pain on a daily basis, weakness, difficulty swallowing, and an unintentional weight loss of 50 lbs, numbness tingling, bladder and bowel dysfunction, the list goes on. My mri of the brain a year ago was fine, LP showed occasional lymphocytes and cells of pia-arachnoidal origin but neg for MS. I've never had mri of cervicle spine.
Thanks for any information you can give me, I know you cannot diagnose over the internet.
P.S.- Also, what does the interpretation of the LP mean (Occasional lymphocytes and cells of pia-arachnoidal origin, this was never explained to me)? Thanks again.
Sorry to hear about your problems. Yes, you can have SLE without an elevated ANA. What was the sedimentation rate? Was their an lower than normal C3/C4/C50? What was the platelet count? It does initially sound like you have a autoimmune problems (vasculitis in particular) or collagen vascular problem. With the symptoms your having it does sound like SLE. However, one can get SLE symptoms with a reaction to medications, so this also needs to be ruled out. It doesn't sound like you have MS, as there were no oligoclonal bands in the CSF, or myelin basic protein. In addition, the MRI was normal. The arachnoiditis is inflammation of the archnoid membrane/space that can follow surgery. The occasional lymphocyte in the CSF might be due to this.
Thank you for your prompt response. In answer to your questions, I BELIEVE my sed rate was 8 which is normal as far as the C complements they weren't done as well as cryoglobulins were not done but were supposed to be. I don't have a number on my platelets or WBC's I was just told everything "looked okay" so I'm assuming they were normal. This would lower the possiblilty of Leukemia as well. They are giving me a copy of my bloodwork and notes to take to the Rheumatologist so if I can, I'll check back and give you the numbers for the platelets and WBC's if anything WAS abnormal. I do know that the last bloodwork I had was for hepatitis and the diagnosis for the lab was anemia. No one has ever told me I'm anemic so I don't know if I am or if they just put it down for the sake of a diagnosis.
The medications that I take on a regular basis are Darvacet for the pain, Klonopin for myoclonic jerking, Albuteral Inhaler for asthma and I was taking Amantadine for fatigue for about 4 months but it became ineffective after that time period so they told me to discontinue it in Feb of this year and possibly restart it again later. They said that this particular drug can become ineffective after being on it for a while. I have not been told to take that again yet.
I sure hope that the Rheumatologist can put all these puzzle pieces together because it gets very frustrating to feel so ill on a regular basis and no one can pinpoint the problem. They have been trying to diagnose me since Feb of 99 but I've had many symptoms for many years. Thanks again for reponding.
One more thing can you tell me what the "cells of pia-arachnoidal origin" in the spinal fluid mean, does this go along with the arachnoiditis like the lymphocytes may of indicated?
Dear doctor, just a short note on sle...does abnormal platelets (419), abnorml ana: 1:80, with a 24sed rate mean sle? or maybe another problem..as increased symptoms present ie neurological symptoms? Like michroncial dx, cns problem, or just....wait and see? Sorry to be posting on this poster but...Would appreciate any response....thanks! Elizabeth Jane
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