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475586 tn?1225027354

High ANA, multiple symptoms and tired of second hand treatment by doc!!!

I've been dealing with whatever this is for almost 2 years this January. Terrible headaches and joint pain which have progressed since June to other areas. I have been experiencing sweats, a positive ANA currently at 1:640 and speckled pattern and weight gain of 20 lbs in past two months. Started tanning in a tanning salon in June. I have pain up under my right rib cage (gall bladder removal last year) and am constantly fatigued. In the past week I have severe pain from my shin to my thigh and can barely walk. I'm 51 and feel like I'm 80!!!
I had pinpoint purple dots on my lower legs in July but they seemed to go away after a couple of months and now I have pencil eraser sized white spots on my lower legs. . Have also been experiencing what feels like a pressure on the lower part of my neck right above the breast bone- like someone is stepping on my throat. Sometimes hard to breathe. Was diagnosed 2 weeks ago with Raynaud's phenomenon and sent over to my rheumatologist since my ANA went up to 1:640 from 1:160. Have family history of Rheumatoid artheritis, Hypothyroidism, fybromyalgia and neuropathy.  I was barely able to walk into his office and was treated like this is all in my head. Told me that I ought to go see an endocrinologist and " some stomach doctor" for the pain under my rib cage. Have had a thyroid test in the past that was negative. I'm just feeling so awful and frustrated that I keep getting passed off from one doctor to another. He did more bloodwork after I asked him to. Will see if that has changed. Regardless, I think I'm getting a different rheumatologist! Does any of this sound like anything to anyone out there??!  A dear friend told me I ought to skip these doctors and just head up to Mayo, but I don't think they treat anyone that doesn't have a more concrete diagnosis do they? Anyway, let me know what you think.
31 Responses
387767 tn?1345875627
Hi, cindy--I guess we have a lot in common.  My name is also Cindy, I'm 52, and I have fibro, arthritis, hypothyroidism and a lot of other problems.  I am pretty much in the same boat as you, except my blood tests did not show anything indicating RA.  My knees do have osteoarthritis in them--I had an MRI.  I also have 2 herniated discs in my neck and kyphosis.  My sister has RA, so I thought I had it also, but the doctors say no.

I have a rheumatologist who is very nice, although most of the treatments I've been getting for fibro are not doing much.  He seems sure that other than my knees and my neck, what I have is fibromyalgia.  I have pain all the time, aching and soreness and also the sharp, stabbing pains.  I also have problems walking without pain, and now my feet are starting to bother me.

I don't really have any answers, but just know you are not alone.  I would say, however, for a rheumatologist to treat you that way is disgusting and I would find another one immediately.  These doctors are so obnoxious sometimes.  I had to try several doctors myself before I found one that even listened to me, especially since my blood tests were all negative.  

Oh, the weight gain and fatigue could be from menopause also.
Avatar universal
Hi Cindy
Are the doctors giving you any medications? From what I am learning, sometimes a diagnosis is not so simple. I have had extreme fatigue, fevers joint pain and constant tingling in my legs. The doctors can only go as far as telling me I have an autoimmune disease. It is so frustrating. I have been home for almost a year. It is so frustrating. I am a bit younger than you but feel like I'm 80 as well. I  was seeing a shrink who told me that I was manufacturing fevers in my head!!!

I am surprised to see how many people are in the same boat.
Feel free to respond any time
Avatar universal
I have am 40 years old and for 10 years I have periodically have the following symptoms: lowgrade fever, body aches , right flank pain, extreme fatigue, joint pain ( my fingers are in so much pain I sometimes feel I cant close them , my spine is constantly aching, I have constant right hip pain) In 2003, I had multiple tests done, MRI, CT scan & just about EVERY blood test possible. No Rheumatoid Arthritis, Neg. ANA, Negative Epstine Barr. The only thing found was a " spot" of arthritis on my lower spine. Now its 5 years later and one again, I am just desperate to live a life like I did at one time- with out pain & fatigue.Because all Doctors that I have seen figures my " body aches were muscular- skelatal issues, I am currently under the care of an orthopedic. I have bursitis in the shoulders and get steroid shots from time to time. When I bring up my non stop hip pain , he seems to feel sense I JUST got an MRI of the spine in 2003, my pain is prob. just arthritis.  Lately I have had to cancel some really important social events because of this " illness". I work in a lab so I decided that I need to take things into my own hands if I am every going to feel better. I did an ANA ( negative), ESR slightly elevated, Complement 3 and 4 were both high, and I am waiting for my Sojrens ( sp? ) antibody to come back. Weird thing is, I thought Id run the c3 & c4 to rule out possible lupus, But mine came out on the opposite spectrum that shows lupus. After researching, I cant find much about what high complement levels mean. I just am wondering if these complements levels being high have anything to do with my health issues. Im sorry to vent, I dont even know where to go from here. I think we all have somethings in common, We know we have health issues but are not sure who to channel them to to make us feel better. Please give me advice.

Barbara Borel
Avatar universal
so sorry, I thought I was posting to the group. I know the feeing of feeling decades older than you actully are. Its especially a shame that some people including doctors are ignorant to our situation and therfore do not have compasssion for us. The sad thing is, if these issues were in my daughter or my cats and dogs for that matter, I would go to the ends of the earth to find out what is wrong. But I tend to put my self last . But Its time to focus on me & see what really wrong.

Barbara
Avatar universal
I have had positive ANA of 640 since the age of 17, and now i am 56. The doctors had no explained reason for my high ANA and called it a "red herring" which meant no explanantion of the cause. They told me as long as it was dormant in my body, there was no harm. I had joint pain, neck pain, back pain, insomnia, headaches, fatigue, depression, and all kinds of things for years. All tests came back negataive, except my MRI, which showed spinal stenosis in the vertebraes and herniated discs. However, after a few years of pure suffering, I went to 7 Specialists, and most of them, including a top Rheumatologist, diagnosed me with extreme fibromyalgia at stage 4 pain level. None of the treatments I tried worked and none of the pain killers. After years of suffering, it finaly became so bad that the Rheumatologist called me a "functional cripple" and i was put on a disability pension. Whether the high ANA had anything to do with it, the doctors never told me. However my daughter has a positive high ANA of 640 as well, and she had a bone marrow biopsy and was diagnosed with ITP....so you never know.
475586 tn?1225027354
Sounds like we have a lot in common. Stinks doesn't it?! I'm not on any meds for anything other than an anti-depressant because it's been such a long haul. None have told me it's in my head, but they sure make you feel like it is. How on earth can fevers be manufactured!? You just hang in there, okay? You're not alone in this. :)
God bless.
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