I suddenly developed intense neck and upper back pain and stiffness 3 months ago upon awakening. This has not abated at all. The pain is severe (stabbing pains in neck) and muscles like concrete in upper back. The pain is severe every morning and wakes me up after just a few hours sleep, I then have to get up as the pain is so bad. The pain decreases slightly as the day goes on but never goes away completely. It has meant that my life has literally stopped since that day 3 months ago. All blood tests within normal range except ana which is 1:100 (speckled). On the mornings the pain is worse I also have pain in my achilles tendon (which is inflamed). Some mornings i have dizziness and weakness in my legs. Last year I suddenly developed sun sensitivity whilst on holiday (severe rash after 2 days that persisted for a month after returning home). I had alopecia when I was 15. In somnia and fatigue kicked in as soon as I returned home from holiday. Tendonitis developed 2 months before the neck pain. My questions are 1: should an anti dsdna test have been performed as a matter of course as the ana result was over 1:80? I am in the uk. 2. Do my symptoms sound like there is a possibility of lupus? Thank you in advance for taking the time to respond. I can't take much more pain, I need to know whats going on with me. I also have palmar erythema and livedo reticularis (mild). I had shingles (they think it was shingles) on my face at age 25 and pulmonary embolism and pneumonia at 30.
I don't think you can have a titre of 1:100 just because of how the testing is done. Maybe it was 1:180? The test result is is not really specific. However, your clinical history is significant.
What medications are you on?
Was there ever a work up done to determine root cause of PE ? Was it related to BC or hormones?
Your symptoms don't sound like Fibromyalgia. That is more of a when-everything-else-has-been-ruled-out condition and your symptoms don't seem to correlate with it. You also have clinical history that Fibromyalgia shouldn't be the first thing the doctor looks for...
I'd be interested to read/hear about your labwork. Do you have a copy somewhere? If you don't get a copy of your labwork and all radiology/biopsy reports and keep them with you at all times.
Have you visited a Rheumatologist yet? The Rheumatologist is the person that will usually order the detailed Rheumatological blood tests. PCP's don't generally have any idea how/what to order. They will usually screen you for potential rheumatological issues which includes ANA. If ANA is positive and you have concerning clinical symptoms you should be referred to Rheumatology. Some of the testing recommended below can be ordered by your PCP while waiting for your Rheumatology visit. Specifically the Basic Labwork, MRI and/or Xray's
PCP should be able to order...
1. Xrays of Chest, Neck and Thoracic spine. Can be done if MRI testing is cost prohibitive though XRAY is limited as to what it can see/detect.
2. MRI w/wo contrast of your brain, cervical and thoracic spine
why: Because you have pain and stiffness in these areas and I think it is important to rule out issues that may need to be corrected. The amount of time you have been in pain warrants an MRI. I do understand this can be expensive so the decision whether or not do this is between you and your doctor. If you're going to do it though, might as well do with and without contrast and ask specifically to do it with and without contrast so that you don't have to go back and repeat it if without contrast shows nothing. Also, because you have a history of clotting, PE the constrast will help radiology see if there are any clots, thrombosis or evidence of vascular issues in your brain, neck , around the spine etc. Don't be scared just get it done so you can set your mind at ease. If you want go for having the brain and entire spine MRI done. I didn't suggest a Lumbar because you didn't seem to express complaints of pain in that area.
2. LABWORK -Basic Overall: The following is typical for a well person exam. See your labwork to see if this has been done already. If unsure you are free to upload your labwork and I can look at it to tell you what has been done as some times the naming conventions used is confusing to non health professionals.
CBC w/ DIfferential, Comprehensive Metabolic Panel, Hepatic Function Panel, Creatinine Kinase
TSH, T3, T4, T immulite (to rule out thyroid antibodies)
Vitamin D Hydroxy
Sed Rate AKA ESR
The rheumatologist will usually be the one to order the below but you can check with your PCP to see if he can/wants to so that it will be available and ready by the time you get into Rheumatology.
Antiphospholipid Antibody Panel which includes the following
-DIL VENOM SCREEN
-ANTIBETA-2 GP1 IGG
-ANTIBETA-2 GP1 IGM
-ANTIBETA-2 GP1 IGA
Rheumatoid Arthritis Specific: While your presenting symptoms above don't really provide suspicion might as well throw it in while you're having your blood drawn:
Anti-CCP or sometimes called CYCLIC CITRULLIN PEPTIDE AB IGG
G6PD, QT - this test is usually done if your Rheumatologist decides to treat you with Antimalarials like Plaquenil or other similar DMARDS.
ANCA - to rule out Vasculitis. You can still be negative ANCA and have vasculitis.
If strong suspicion of Vasculitis, Dermatology can biopsy.
Also, any rash can be biopsied as well. Best done via Punch Biopsy by a dermatologist. Try to avoid steroids or anti-inflammatories prior to visiting dermatologist.
Because your ANA pattern is speckled, further blood tests should include:
Sm+ (Lupus specific)
Scl-70+ – diffuse cutaneous scleroderma (dcSSc) -your symptoms don't really scream scleroderma but might as well just check it.
Histones - to rule out drug induced Lupus or Drug induced antibodies
Speckled ANA I believe is the least specific and often found in normal population and people with Infections (viral or bacterial) liklihood of positive speckled ANA increases with age. If you recently had shingles, a viral or bacterial infection this may be the reason for positive ANA, however, in light of your clinical history, it is reasonable to have a detailed work up.
False positives can be induced by Drugs or Cancer as well. I wouldn't worry about cancer. If there is concern of that it will be reflected in your CBC w/ Differential
Urinalysis with / Reflex Microscope. Don't do a Urinalysis while menstruating. Urinalysis can do a basic screen for blood/protein to determine if further testing is needed. Urinalysis is cheap
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