ANA positive , speckled titer 1 : 160. RF neg. Severe joint pain in multiple sites, muscle weakness and constant spasms. Extreme fatigue, hair loss, sores on my scalp, stiffness throughout the day but severe in the AM. My doctors never told me my results till I finally asked last week. ( the labs were done June 2009) Can anyone tell me where to go from here and what to do next. Looks like I am going to have to figure this out w/o my doctors help. I am turing 30 on Friday so age isn't the problem. (I think) I ave been suffering from this for nearly 3 years.
Your ANA titer is low. Are you taking any medications ? I believe there is one anti-depressant that could cause some of your symptoms. Also... are you under a great deal of stress ? If no, then consider asking your physician about Celiac disease and/or seeing a Dermatologist.
I am taking Mobic and they have me on the occasional medrol pack. Other than that nothing. They stopped by pain medicine in January. I just found out I have fractured RIB 4-9 and have no idea how it happened.
I saw a Rheumoltologist about 6 months ago. The only thing he was looking for was RA and that came back NEG. He sent me back to my regular P.C and that is where it all stopped.
I keep getting the " I just don't understand; you are so young to be having these problems. "
Oh, that is sooo vry frustrating to have lab one and they don't get back with you. They act like they are the only busy people and their lives are so inconvenienced by our petty problems.
I don't know what to tell you other than seek out another Family physician. You will need a referral. There is a whole host of problems that can cause the symptoms you are speaking of. Many autoimmunes other than RA, lymes, RMSF, etc. Your ANA may or may not be sigificant. When they check your ANA again, SPEND TIME IN THE SUN PRIOR TO THE TEST!!!!!
Here are a few illnesses that you might want to consider. When I was going through the dx process, I researched and would take my findings to my dr. and ask....could it be ????. We actually would discuss the possibilities and he would order the test. Sometimes I would ask if they could test certain things. He was such a blessing. In the middle of the wildness, he was wonderful. I pray you get dr. wonderful too.
Rocky Mountain Spotted Fever is another possiblity:
all of the above except no stiff neck, no erythema migrains, and no leukopenia.
(I ended up testing possitive to RMSF) I was a very sick puppy last year. Fibro, lupus and RMSF
fatigue, headache, short-term memory loss, muscle pain, difficulty concentrating, joint pain, depression, abdominal pain, lymph node pain, sore throat, lack of restful sleep, muscle weakness, bitter or metallic taste, balance disturbance, diarrhea, constipation, bloating, panic attacks, eye pain, scratchiness in eyes, blurring of vision, double vision, sensitivity to bright lights, numbness or tingling in extremities, fainting spells, light headedness, dizziness, clumsiness, insomnia, fever or sensation of fever, chills, night sweats, weight gain, allergies, chemical sensitivities, palpitations, shortness of breath, flushing rash of the face and cheeks, swelling of the extremities or eyelids, burning on urination & hair loss.
reported to follow a # of infections like Epstein Barr, Mono, hep C, lyme, etc.
fatigue, hair falling out, sores in mouth and or nose, sores in head or even on your face and other parts of your body, joint pain (sometimes w/ swelling), Raynauds (in some), cold intollerance, occasional hot flashes, muscle aches, nausea, diarrehea, severe headaches, tachycardia, weakness, heavy feeling on chest, abdomen swells, elevated ANA, rash on face. (to name a few)
Oh my goodness!!! Hello...., welcome to my world!!! I am so feeling your pain, and walking the same path as you, my friend.
Everything is the same, (my symptoms), as you, except I haven't experienced hair loss, (although I do have significant breakage), but that is due to Hashimoto's, (thyroid). I have a positive ANA, but all my results are negative for all the "Usual" autoimmune stuff.
So, despite the fact that I have been diagnosed with 4 autoimmune disorders, (Hashimoto's, Raynauds, vitilago, and Ehlers-Danlos Syndrome), my Dr's are insisting the symptoms I am experiencing are not autoimmune related, all because my labs/blood work, and results, don't fit into the "Cookie Cutter Status Quo", of HMO's, PCP's, and looking beyond the pages of the diagnostic manual to see that not every patient, every person, or every condition, manifests, or presents in the same way. It's just lazy doctoring!!!
Because I have come across some of the same issues in regards to symptoms, and similar struggles to obtain an appropriate diagnosis, I have had to figure things out for myself so that I may present my Dr's with an explanation as to why I lack the "diagnostic" results (which they are so strictly dependent upon), and a possible disorder which I meet all of the diagnostic criteria for, and present them with a possible diagnosis which will explain most of my symptoms, and will hopefully motivate them to consider some other possibility, other than the most common "Top 10", of autoimmune disorders.
So, you should look into and investigate Dermatomyositis, (which affects proximal muscle groups and skin), or Polymyositis, (which does not affect the skin). These two conditions are very similar, and each is pretty rare. You cannot diagnosis either one of these two disorders based on the "standard" blood tests which are generally ran and ordered for suspicion of Rheumatoid disorder or autoimmune, all the results will come back negative with the exception of the ANA, which will be positive.
To diagnosis this either one of these two disorders, you need to have at least 4 physical criteria, (there are approx 11), either currently, or previously. For example, Dermatomyositis typically presents with what is called a Heliotrope rash, currently I am not broke out with a Heliotrope rash, (thank god because it's very uncomfortable), but I have 3 times previously, which was diagnosed incorrectly all 3 times.
Regardless of incorrect diagnosis, the treatment is the same, typical cortisol, (steroid), cream, and with that, I have just met 1 physical diagnostic criterion for this condition. Some individuals never get the Heliotrope rash, but have "other" dermatological manifestations, (such as ulcers on the scalp, or in the ears, or mouth), which I have also developed a number of times too.
Either way, there is no "Cookie Cutter Mold" in which all autoimmune disorders or patients must automatically fit into. You must find YOUR disease and you must force your Dr. to see that you fit the criteria to support a diagnosis then demand he order the appropriate diagnostic testing to support and confirm your "preliminary” diagnosis.
This may be difficult because these two disorders are pretty rare, and the diagnostic testing to confirm it is not standard, i.e. urine test for serum creatine kinase, a biopsy of the muscle, skin, or both, MRI, and EMG, etc... and those are just the standard battery of diagnostic testing specific to these two autoimmune disorders.
At the end of the day, if you are not happy with your medical care, go see someone else, be insistent, research and investigate, and be your own advocate. I know it's hard, cause I'm fighting that fight too, but so often Dr.'s don't see the people attached to the disease... they see symptoms, and if those symptoms, are ambiguous, and not falling in line with the check list most of them use to diagnosis, then... “Your fine! Get some rest, reduce your stress level, exercise regularly, and eat a good diet! Your fatigue and body aches will resolve on their own"!!!! Right??? I think not!
Anyway, keep on fighting the good fight and I wish you luck! Let me know what you think of either one of those two disorders and if your symptoms fit into either one. Also, let me know how your situation ends, and I'll keep you up to speed with mine also. Once again, best of luck to you and I'm wishing you painless days ahead!
I am a long term systemic Lupus patient with long term pain in all large joints, especially legs. Three years ago my hip pain began to get more severe. Two years ago, I fell mildly, and never walked again. Couldn't bear weight on my legs cause of hip pain. My life became agony, the hips got more and more severe, until I screamed with pain if my legs were bumped. Couldn't sleep with my husband, in case he should touch me accidentally and I would awake screaming. I have necrosis of both hips.ni had both of them removed 6 weeks ago, and I now have my life back. Knees and ankles and shoulders hurt, but nothing like the hips did. My hips are painless. DON'T BE AFRAID TO ASK FOR X-RAYS ORLAB WORK! Be your own advocate!
Thanks for sharing your story. We need more people like you. I'm terribly sorry to hear of all your struggles, but delighted to hear of the relief in the proceedure. I've never heard of necrosis. What is that?
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