Positive ANA and Ck

I am a 40 year old male noticed pain a few years back in my legs. The doctor DX with RLS last summer the pain in my legs began to change I noticed more cramps and fatigue always have a burning pain. I went in for an exam the Doctor had them do blood work with my ANA coming back as elevated. They then sent me to a neurologist who began having tests done he found only light symptoms of neuropathy in my legs so prescribed me Gabapentin which has now gone up 4x the level when first given the med. They then decided i needed to see a Rumatologist which ran more blood work again another high ANA and CK blood result. They also stated that i tested positive for drug induced lupus however I have never taken any medicines known to cause this he increased my gabapentin and sent me on my way. I began getting really bad so i went to see my family doctor He took my blood and again elevated ANA and CK and at that time he said he wanted to send me to the Mayo clinic. I went to the Mayo and after 3 days of constant tests MRI'S, BRAIN SCANS, BONE SCANS, EMG tests and gallons of blood and urine. The tests results showed
Result Name Result Abnl Normal Range Units Perf. Loc.
Creatine Kinase(S)...........8336 ROCLIS 485 h 52-336 U/L RO
Result Name Result Abnl Normal Range Units Perf. Loc.
Antinuclear Ab...............9026 ROCLIS 9.0 h <=1.0 U RO
Interpretation: Strongly Positive (>= 6.0)
The MRI'S were negative but Bone scan showed numerous hot spots in my Knee's and both feet and toes. They said I show signs of Lupus and Sjogrens syndrome but they don't have enough results to DX either one at this time. They want me to come back in 4 months for more testing. I know everyone on here is going through the same thing but it is driving me nuts not knowing and living in pain on a daily basis just to be told you will have to come back and see us in 4 months. If anyone has any advice i would greatly appreciate any help you may have to offer.

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sjogren's and Lupus overlap in many individuals. to confirm sjogren's syndrome a lip biopsy is required. the SSA (anti RO52) antibody associated with Sjorgren's syndrome can put you at risk for a combination of optic neuritis and transversemyelitis now called neuro myelitis optica. this is also seen in Systemic Lupus Erythematosus patients (Lupus). do you get the 'butterfly rash' on your face (looks like a wolf's face hence the term Lupus).
with the servere dry eyes make sure you keep your eyes well lubricated with a good quality lubricating eyedrop that is PRESERVATIVE free. these come in single use vials. at night use a gel type lubricating eyedrop to help prevent your eyelids from sticking to your eyes. all of this is very critical as the abrasion between the eyelid and eyeball can result in corneal and conjunctival problems resulting in ucleration and possibly infection.
rarely lupus can affect the retina and inside of the eye by inflammation known as uveitis. because of this you have to have annual SLIT LAMP MICROSCOPE exams by an opthalmologist. ANY change in vision should prompt immediate evaluation by an opthalmologist.
sometimes fibromyalgia occurs as well as other connective tissue disease processes so you may require additional meds to quiet things down. for many of us with Fibromyalgia Lyrica or Gabapentin is prescribed to stop neurological pain. Tramadol is an analgesic that works as does a muscle relaxer such as Flexeril. Sometimes the DMARD drugs are used to treat RA and other connective tissue diseases as well as uveitis.
keep a close watch on you kidneys and heart too. sometimes amyloidosis occurs as well.

Wish you the very best,
Mike Bartolatz

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Thank you so much for the advice Mike it's hard dealing with the issues when every time you go in they tell you yes there is something wrong with you we just don't know what. I have had the butterfly rash on my face into my eyelids however was told that and the positive ANA was not enough due to me SED rate being normal to DX but it is something we will continue to test for. The Med's you listed are all that I'am on currently Gabapentin doesn't seem to do alot but the tramadol does offer some relief but i have to take it 3x daily to get through the day. I will keep a close eye on things and again thank you so much for your response.

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Thonas: I know having to wait 4 months seems like forever. The docs are hoping you will present more symptons to make a good diagnosis and start the right kind of treatment. If they give you a drug too early, it may mask a symptom. Stay connected and let us know how your doing. Good thoughts.

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