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Thread: !Please Help! Rheumatoid Arthritis, Lupus, or Polymyositis? ConfusingSymptoms, Etc...

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    Unhappy !Please Help! Rheumatoid Arthritis, Lupus, or Polymyositis? ConfusingSymptoms, Etc...

    I am a(n almost) 25 year old female with some pretty specific RA positive results/symptoms (joint swelling, elevated Rheumatoid Factor, and very elevated CCP) and a diagnosis for seemingly aggressive Rheumatoid Arthritis since 2005; however, I have also recently tested positive for Anti-Jo1 and Histone Ab, as well as having a low Glucose count, max of what's considered a "normal" WBC, as well as a "high normal" for absolute mono... I read that Anti-Jo1 was only present in Polymyositis, Histone Ab was positive in lupus (possibly drug-induced?), and CCP was only super-elevated in the case of Rheumatoid Arthritis. Is anyone else confused? Is it possible I was misdiagnosed with rheumatoid arthritis 7 years ago? Originally they said I tested positive for RA and Lupus, but later decided to treat for RA only... I'm really not sure what led them to that decision, as it was quite some time ago, and highschool me wasn't the most responsible one when it came to keeping up with all of this stuff...
    Doctors have prescribed many different RA medications (Methotrexate, Cimzia, Simponi, Humira, Enbrel, etc...) to treat this with the only one providing any relief (so far as I can tell) being Prednisone and possibly Sulfasalazine (I am FAR from walking normally even when I was on 50mg of Prednisone). My two middle fingers are swollen (right middle finger far moreso than left); my right wrist only has a very limited range of motion (I cannot bend it backwards at all! PS- Mild stiffness and great pain upon movement was the first /notable/ symptom leading me to have my joints assessed); my right elbow functions sufficiently, however, does not straighten completely (generally unnoticeable until attenti brought to it); and my right knee mostly creates pain if I bend it when trying to walk normally, etc. (I was recently told by a rheumatologist that there seems to be ligament damage in my right knee). My feet (and a few other random joints) rarely have exhibited swelling or pain; however, occasionally in times past there have been tremendous amounts of swelling in my feet to the point where I could not fit into a pair of shoes, but nothing has been consistent over the last 7 years in that regard. I also frequently but inconsistently experience a sharp electrical pain on the right side of the back of my neck upon sudden movement; my neck is consistently uncomfortable but not necessarily in pain; I feel the need to stretch my neck by tilting my head repeatedly to one side and then the other (Often I think I must look completely spaztastic because I exhibit some extreme OCD characteristics when it comes to symmetry; if it doesn't feel equally stretched or popped on both sides, I have to keep doing it); I have difficulty transitioning my neck from the upright to the leaning back position and vise versa (It really hurts towards the midway point in either direction).
    My other current or past medical issues include: daily headaches; daily fatigue; several cases of shingles; non-itchy, slightly raised spotty redness on chest, neck and bottom/back of ears seemingly lasting for several months (past); redness on chest after sex; possible early miscarriages; iritis; ADD/ADHD; difficulty concentrating/staying focused, even on Adderall for AD(H)D; disorientation; bipolar disorder; a fast and aggressive pulse paired with light-headedness, shortness of breath, tightness of chest, and leg muscle weakness (Leg muscle weakness feeling is similar to that which occurs if one is very sick with diarrhea - Sorry for being so ... verbose?) occurring anywhere from twice daily to once every two months with "episode" durations of as little as thirty seconds to more or less than fifteen minutes in both stressful and non-stressful times (I have never received official diagnosis for this, as it has never occurred while under a doctor's direct observation; however, a doctor did previously note a possible heart murmer); loss of voice (or severely modified raspy and whispery voice) occurring for a couple weeks; occasional "cuts" or sores around fingernails or toenails that seem to almost blister eventually and have taken up to 6+ months to heal; occasional pale orange highlighter-colored splotchiness that seems to appear under the skin (most noticeable at the knees when very cold; used to happen all the time, not so much these days that I have noticed); I have what looks like an adam's apple (but I think those are mostly supposed to belong to boys); in the past, what seemed to be glands on the sides of my jaw were swollen and I could press and rub them feeling a "bump"; sometimes when I breathe very deeply, my chest feels too full and hurts; and more recently, blood from the rectal area (more obviously seen during "that time of the month"); as a baby I had a severe reaction to the Pertussin in DPT shot resulting in seizure, incubation and spinal tap. I also am a pretty severe worrier... My husband says a normal person does not have this much anxiety (He's right). D:
    I have been on Prednisone and Methotrexate for 7 years, so other symptoms may be masked.
    I have likely forgotten a great deal of other things, but please feel free to ask me if you think you need more information to help me. My doctors have all decided it's Rheumatoid Arthritis and seem unilling to consider any other possibilities. My husband and I feel strongly that being on so many different medications specifically intended to treat RA -SHOULD- in fact treat the RA if that's what it is. My hope is that hearing from some of the "veterans" will help me to help my doctors figure this out! I only have one body, and mine is already fifty years worse off than it should be... I have the body of a 75 year old, and that is no way to live at 24! Any advice / personal stories / thoughts are appreciated! I want to beat this!!!
    Ashley Marie Wright

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    First let me welcome you to WHL. One of the really hard things about dealing with any AI disease is that so many of them act alike and even respond alike to meds. I think you are doing the completely right thing in taking your medical condition into your own hands. Too many people forget that the doctors work FOR them and not the other way around.

    While I am not going to touch all of the issues you mentioned I will tell you that those are very common. Even the anxiety is normal for many of us. Not only does it happen because we worry about our illness it can also happen because of the chances that happen in our brain with these disease. "Normal" people may not be that way but many AI patients are.

    I look forward to getting to know you and welcome to WHL!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Hi Ashley,
    Welcome to WHL. Has any doc told you that it could be all of them? Many of us have found that we have overlapping autoimmune diseases - they love to run in packs. My rheumy called it Mixed Connective Tissue Disease - I have an overlap of Lupus, Sjogren's, RA and Psoriatic Arthritis.
    Luckily, most of the AI diseases are treated with the same meds.
    Work with your rheumy to figure out which meds will give you the most relief.
    Hugs,
    Marla

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    Hi Ashley,

    Man, you are dealing with a truckload of crap! I'm so sorry. I know it must be hard. I'm not dealing with 1/4 of the symptoms you are and it's hard for me so first, just know you must be a very strong person. I just want to point out I'm not a doctor and of course, can't diagnose you, but from what I've read many of the symptoms you listed are common with several AI diseases. I have learned that auto immune disorders come by the truck-load, and most people have more than one. I think the pivotal thing is that you find at least one or more than one rheumatologist that is willing and able to take on your case. I think you should look into going to a well known hospital wherever you are located. On the east coast here they have great hospitals, but you may need to be willing to travel. I think you should call around and research hospitals/facilities in you area to see who can provide you with the best treatment. We can offer advice and suggestions but ultimately the dr has to diagnose and more importantly find a treatment that works for you. In my opinion, that is the hardest struggle... Not only to receive the diagnoses to even begin the treatment but to find the treatment that can keep the diseases as minimal as possible. Keep us posted on your progress!
    Graves Disease 2007, Ceilac's Disease 2008, Lupus 2012.
    "Не дай мне Бог сойти с ума."
    God, please don't blow my mind. - Aleksandr Pushkin

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    Sulfasalazine is a sulfa drug, and will "flare" some lupies, so if it helped, maybe it isn't SLE. Then again, maybe it is... Have they done a bone scan on you, or an MRI of your spine? Have they ever mentioned ankylosing spondylitis to you? disk damage? Been in any car wrecks that maybe tweaked your neck or back? Have you done plaquenil?

    I was first diagnosed RA in 1991 (I think ?? memory is fried). Then not (I was on Feldene). Then RA, then I got a "I don't know what you have, but it's not RA" from an "expert" in the field (I was on Celebrex). Then lupus, then RA, then not. 6 docs, 6 opinions over the course of like 20 years. When my blood issues got bad enough, I was sent to a hematologist, who said "it's lupus. that's all it can be." It took another 2 years and another 2 rheumatologists to make it "official"... Second opinions (and 3rd & 4th, etc.) matter, as do the circumstances of your symptoms when they're testing you, apparently, and maybe how far along you are. Good luck with figuring it out. We're praying for you.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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