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Seronegative Rheumatoid Arthritis - and then some


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Old 03-20-2017, 04:27 PM   #1
Tamara733
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Seronegative Rheumatoid Arthritis - and then some

I had posted a few years back about all of the issues I had been going through, and doctors turning me out due to "faking illnesses".

-Gallbladder removal after years of being misdiagnosed
-Pregnancy issues (bleeding) and premature birth (28 weeks)
-Extra sensitive skin to the sun/weather changes (rashes)
-Constant blood-shot eyes (Dry/gritty feeling) as well as partially detached retina
-"bug bite" type lesions that turned into blisters. Happening at random times throughout the year
-tingling lips/mouth
-Pain in feet, knees, elbows,hands etc. Pain in feet for at least 12 years, now moving upwards in my body. Stiffness in morning/after inactivity.


After leaving a domestic abuse situation last year, I finally got back into school, found a great job as a Medical Office Assistant and started working in the health field.


Over last two years I've had the following Labs/diagnosics completed:

-Microscopic AND gross Hematuria (Some mornings I wake with kidney pain and will see blood in my urine) *Cystoscopy and CT scan of kidneys don't show source of the bleeding* Keep in mind the microscopic Hematuria has been occuring for 18 years.
-Kidney cysts (based on ultrasound and CT scan) Doctors don't feel this is concerning enough for a referral to a Nephrologist as my kidney function blood tests are fine.

I was finally referred to a Rheumatologist last spring after I went to a new doctor about burning in my feet and my toes turning purple. After a year of waiting for the referral, the Rheumy was concerned I might have Lupus. She sent me for 43 blood tests (16 vials!), nuclear bone scan, Head to toe x-rays and an Ultrasound on my feet.

Other than a slightly elevated uric acid level, all of my blood work came back normal.

Based on findings on the ultrasound (Synovitis), and bone scan - I've been diagnosed with (seronegative) Rheumatoid Arthritis. I was started on Plaquenil 200mg (increasing to 400mg daily). She wants me to repeat some blood work every 3 months.

Because of the negative blood work, she wont' look any further into my other symptoms.



In these past 2 weeks, I've been experiencing a breakout of the blister-like lesions again (started on my chest, down the trunk of my body, legs, arms and a few on the back). They are extremely itchy, then burst - becoming painful before they heal over. I'll be getting a punch biopsy tomorrow on one of them. These are NOT chicken pox/shingles.

I was also referred to a dermatologist for a lesion that I have had on my cheek since last November (tried Fucidin/Corticosteridoal cream, which is not working). I've also been experiencing intensely itchy rashes up and down my legs and chest on and off throughout the years (like hives).

I've also been dealing with a severe case of painful "Dandruff", but the over the counter shampoos (head and shoulders, selsun blue, etc) are very painful (severe burning). Prescription strength is doing nothing.

I also noticed on and off over the past year that my mouth burns (lips, tongue, roof of mouth, even into my nose) as if i had been eating spicy food. But I haven't been. It starts out in the morning kind of tingly like chewing on a piece of mint gum, and it progresses to burning throughout the day. My doctor will be sending me for a CT scan of the brain.

Either way, just wondering if anyone has had ANYTHING like these symptoms with the sero-negative RA. I'm just frustrated. I want to be healthy.


https://gyazo.com/99be9ac19e84f76ca18c88e37922c725
Picture of two of the lesions on my calf.

Last edited by Tamara733; 03-20-2017 at 05:26 PM. Reason: adding pic

 
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Old 03-20-2017, 05:48 PM   #2
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Re: Seronegative Rheumatoid Arthritis - and then some

After reviewing all your symptoms, it seems that autoimmune disease is certainly at the root of your troubles. The seronegative arthritis is common in rheumatoid arthritis (was an anti-CCP test done?), and seronegative lupus could also be a consideration, explaining the rashes and blood in urine. A skin biopsy of rash WITH LUPUS BAND TEST could be diagnostic, and well worth it, but must include the lupus band test, not just an ordinary skin biopsy (done by dermatologist). There are many blood and urine tests that can help diagnose lupus, and a rheumatologist should do them all, since you have had no specific diagnosis to explain your symptoms over a long period. I hope you get some answers soon. This is something that requires diagnosis and treatment. Don't let anyone just dismiss your symptoms because your blood tests are negative. I had symptoms of lupus for 10 years before my blood tests showed a positive ANA, and now have both lupus and sero-negative RA to contend with. You know how you feel and what is normal for you. Keep pursuing answers, they will come in time with the right Drs. investigating. Also, consider for your rash dermatitis herpetiformis, related to gluten sensitivity, which causes blistery lesions that itch terribly and can be associated with lupus. Bullous lupus is another possibility as far as the rash.

Last edited by ladybud; 03-20-2017 at 05:56 PM. Reason: added info on rashes

 
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Old 03-20-2017, 07:30 PM   #3
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Re: Seronegative Rheumatoid Arthritis - and then some

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Originally Posted by ladybud View Post
After reviewing all your symptoms, it seems that autoimmune disease is certainly at the root of your troubles. The seronegative arthritis is common in rheumatoid arthritis (was an anti-CCP test done?), and seronegative lupus could also be a consideration, explaining the rashes and blood in urine. A skin biopsy of rash WITH LUPUS BAND TEST could be diagnostic, and well worth it, but must include the lupus band test, not just an ordinary skin biopsy (done by dermatologist). There are many blood and urine tests that can help diagnose lupus, and a rheumatologist should do them all, since you have had no specific diagnosis to explain your symptoms over a long period. I hope you get some answers soon. This is something that requires diagnosis and treatment. Don't let anyone just dismiss your symptoms because your blood tests are negative. I had symptoms of lupus for 10 years before my blood tests showed a positive ANA, and now have both lupus and sero-negative RA to contend with. You know how you feel and what is normal for you. Keep pursuing answers, they will come in time with the right Drs. investigating. Also, consider for your rash dermatitis herpetiformis, related to gluten sensitivity, which causes blistery lesions that itch terribly and can be associated with lupus. Bullous lupus is another possibility as far as the rash.
Thanks for the reply Here's the tests that my Rhemy had ordered:

CBC, PT, PTT, Urine, Albumin, Alkaline Phosphatase, ALT, Bilirubin Total & direct, Calcium, Creatinine Kinase, Creatinine,Ferritin, C3, C4, Immunoglobulins, RF, TSH, ESR, CRP, ANA, ANCA, Urine Protein to Creatinine Ratio, Anticardiolipin Antibodies, Lupus Type Inhibitor, Anti B2 Glycoprotein Antibody, Anti-Cellular Antibodies, Anti-dsDNA, Anti-single stranded DNA (ELISA), Anti-Histone, Anti-DFS, Systemic Lupus Profile (anti-sm, U1RNP, Ro52/TRIM21, SSA/Ro60, SSB/La, PCNA, dsDNA, Chromatin, Ku, Clq), Anti-C1q Antibody, Scleroderma Profile (Topo-I/Scl-70, RNA polymerase III, fibrillarin, Th/To, Ku, PDGFR, PM/Scl-75, PM/Scl-100, NOR90/hUBF), Sjogren's Syndrome Profile. And a few others (eg HIV, Heps etc).

EKG (clear)

Lets just say I almost passed out with getting all that blood drawn :P

I'm grabbing a copy of my blood tests tomorrow so I can actually look at them in person.

I'll be getting a punch biopsy tomorrow of one of those lesions (in that picture I linked). they're circular in nature - varying in size all over my body. Those two in particular are on my calf. I scratch subconciously while I'm sleeping, and end up with dried blood on my legs/sheets when I wake up in the morning.

Last edited by Tamara733; 03-20-2017 at 07:57 PM.

 
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Old 03-21-2017, 04:35 AM   #4
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Re: Seronegative Rheumatoid Arthritis - and then some

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Originally Posted by Tamara733 View Post
Thanks for the reply Here's the tests that my Rhemy had ordered:

CBC, PT, PTT, Urine, Albumin, Alkaline Phosphatase, ALT, Bilirubin Total & direct, Calcium, Creatinine Kinase, Creatinine,Ferritin, C3, C4, Immunoglobulins, RF, TSH, ESR, CRP, ANA, ANCA, Urine Protein to Creatinine Ratio, Anticardiolipin Antibodies, Lupus Type Inhibitor, Anti B2 Glycoprotein Antibody, Anti-Cellular Antibodies, Anti-dsDNA, Anti-single stranded DNA (ELISA), Anti-Histone, Anti-DFS, Systemic Lupus Profile (anti-sm, U1RNP, Ro52/TRIM21, SSA/Ro60, SSB/La, PCNA, dsDNA, Chromatin, Ku, Clq), Anti-C1q Antibody, Scleroderma Profile (Topo-I/Scl-70, RNA polymerase III, fibrillarin, Th/To, Ku, PDGFR, PM/Scl-75, PM/Scl-100, NOR90/hUBF), Sjogren's Syndrome Profile. And a few others (eg HIV, Heps etc).

EKG (clear)

Lets just say I almost passed out with getting all that blood drawn :P

I'm grabbing a copy of my blood tests tomorrow so I can actually look at them in person.

I'll be getting a punch biopsy tomorrow of one of those lesions (in that picture I linked). they're circular in nature - varying in size all over my body. Those two in particular are on my calf. I scratch subconciously while I'm sleeping, and end up with dried blood on my legs/sheets when I wake up in the morning.
Wow, I would say that is a more than thorough workup. Surely some good information will come out of those tests. I would have confidence in your Dr and think you should make progress when the test results are in.

 
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Old 03-21-2017, 04:42 AM   #5
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Re: Seronegative Rheumatoid Arthritis - and then some

The results were in last thursday, when she diagnosed me with seronegative RA, no lupus.

I wouldn't have questioned her about the RA, she said it's very mild and WILL progres, but the issue is that I have a lot of skin issues, the burning mouth, and kidney issues (on a side note Polycystic Kidney diease is a factor in my mother's side of the family).

As for the guaranteeing that the RA will progress, I'm not sure if that' s because of what she has seen IN my bloodwork or just from the diagnostics. This is why I wanted to see all of my results for myself. Do a little self research (always neat to learn about yourself anyways right?).

For now I know my ANA was 1:80, "moderate synovitis" in both feet from U/S, and Bonescan shows "increased uptake", and currently no noteworthy errosion of my bones (I'm waiting to get copies of my actual test results)

Last edited by Tamara733; 03-21-2017 at 08:31 AM.

 
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Old 03-21-2017, 02:55 PM   #6
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Re: Seronegative Rheumatoid Arthritis - and then some

Ok So Diagnostics are showing (I'm only pinpointing any issues since there is a ton of info).

Ultrasound Feet BL
Minor chronic appearing synovitis at the second through fourth MTP joints bilaterally. Suspected ganglion cyst related to the flexor tendon adjacent to the left second MTP joint.

Nuclear Medicine Bone Scan
Mildly increased radiotracer upatake in the mid feet and elbows bilaterally, possibly degenerative versus infectous/inflammatory. Mild asymmetric radiotracer uptake in the right anterior knee, also likely degenerative. Pattern of radiotraccer uptake is nonspecific.

Xrays
Right hand: There is prominent periarticular osteopenia. The DIP, PIP and MCP joint spaces are preserved. No marginal erosions are seen. The intercarpal joint spaces are normal.

Left Hand: There is pronounced periarticular osteopenia. The joint spaces are preserved. There is no visible marginal erosion.

Right foot/ankle: shows and old fracture that had healed.

Rest is pretty clear.


EKG was abnormal. It may have been because I had almost passed out a few minutes earlier getting my blood drawn. I'll probably end up getting that redone.



Bloodwork flags:

RBC in Urine: 21-30
Immunoglobulin M: 0.37 (Ref range is .40 - 3.00)
WBC: 12.4 and 11.2 (over last month, two readings) (Ref range is 4.0 - 11)
Lymphocytes: 4.0 and 4.4 (over last month, two readings) (Ref range is 0.5 - 3.3)
Immature Granulocytes: 0.1 (should be and has always been 0)

Notable:
Sedimentation Rate 19 (Ref Range 0-20)
ANA 1:80 (considered Negative).



Punch Biopsy was performed today on one of the lesions on my leg.

Waiting on appointment time for CT scan of my brain.

Last edited by Tamara733; 03-21-2017 at 03:39 PM.

 
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Old 03-22-2017, 08:46 AM   #7
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Re: Seronegative Rheumatoid Arthritis - and then some

Tamara, I think your Dr. said the RA will progress just based on the nature of the disease, but that can be mitigated (slowed down) with appropriate treatment. I personally would not rule out lupus. I would consider an ANA of 1:80 a low positive, and with the rashes, blood in urine, think it is a possibility as well. Some people like me have both lupus and RA. With polycystic disease in your family, a renal ultrasound might be helpful. A bone density test would also be good to assess osteopenia and establish a baseline. Your skin biopsy should shed light on the rash. In the meantime, I would stay out of the sun, and watch to see if your general symptoms or rash increase after sun exposure. That is an important symptom in lupus. Keep us posted please. It is great you are asking for copies of your lab results. I would do the same for the pathology report on the biopsy.

 
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Old 03-22-2017, 09:02 AM   #8
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Re: Seronegative Rheumatoid Arthritis - and then some

Thanks Ladybud, it's nice to know that I can finally be taken seriously and not brushed off.

It's great to be able to talk to someone who has an understanding and experience with what I'm going through. You're replies are VERY much appreciated

 
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Old 03-29-2017, 05:38 AM   #9
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Re: Seronegative Rheumatoid Arthritis - and then some

Tamara, hi. I'm curious about your blistery lesions, because I had a HUGE problem with widespread blistery lesions when I was 10. Are they really plump with fluid? Is there a slight "cast" to the fluid (fluid in mine was faintly yellow)?

Way back then, my small-town doctors were clueless, and they stayed clueless even when, within 3 years, I felt much worse, with leukopenia (low WBC's), severe pain, fatigue, elevated sed rate, low-grade fever, hair loss, etc.

Three decades passed before I started getting a completely different rash, ring-like circles that didn't itch, scar, or de-pigment. I was finally dx'ed, in my late 40's, with a "subset" of lupus called SCLE. I fulfilled the ACR criteria for SLE, but weirdly my ANA stayed negative but anti-Ro was positive. Three LBT's (Lupus Band Tests, highly specialized deep-punch biopsies with immune stain tests) were grossly positive, which is seen only in SLE. In other words, I was an outlier, didn't present with the most "classic" things, plus had milder things, which ALWAYS makes one harder to dx, I suspect. (Gets you called a LIAR, too. I was sorry to read how doctors spoke to you. Me too, I hated that!)

Only then did I wonder if my blistery outbreaks at age 10 might have been a rash called "bullous lupus". No way to know at this late date, but I share this as something you might want to look into & ask about. Wishing you more clarity & improvement, of course! Sending hugs, Vee

 
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Old 03-31-2017, 12:22 PM   #10
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Re: Seronegative Rheumatoid Arthritis - and then some

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Originally Posted by VeeJ View Post
Tamara, hi. I'm curious about your blistery lesions, because I had a HUGE problem with widespread blistery lesions when I was 10. Are they really plump with fluid? Is there a slight "cast" to the fluid (fluid in mine was faintly yellow)?

Way back then, my small-town doctors were clueless, and they stayed clueless even when, within 3 years, I felt much worse, with leukopenia (low WBC's), severe pain, fatigue, elevated sed rate, low-grade fever, hair loss, etc.

Three decades passed before I started getting a completely different rash, ring-like circles that didn't itch, scar, or de-pigment. I was finally dx'ed, in my late 40's, with a "subset" of lupus called SCLE. I fulfilled the ACR criteria for SLE, but weirdly my ANA stayed negative but anti-Ro was positive. Three LBT's (Lupus Band Tests, highly specialized deep-punch biopsies with immune stain tests) were grossly positive, which is seen only in SLE. In other words, I was an outlier, didn't present with the most "classic" things, plus had milder things, which ALWAYS makes one harder to dx, I suspect. (Gets you called a LIAR, too. I was sorry to read how doctors spoke to you. Me too, I hated that!)

Only then did I wonder if my blistery outbreaks at age 10 might have been a rash called "bullous lupus". No way to know at this late date, but I share this as something you might want to look into & ask about. Wishing you more clarity & improvement, of course! Sending hugs, Vee

Hi Vee,

Thanks so much for the well wishes <3.

I'm actually still waiting on Biopsy results (takes 3-10 days... it's going on day 9, so won't have results until at least Monday). The itching progressed, and circular lesions spreading rapidly on my legs,stomach and back. I'm not able to get in with my Rheumy until April 5th (she's away on vacation and that is her first day back).

The July date is too far away for dermatologist appt, so they are in search of a new one that can get me in sooner. On a side note: I work in a clinic and one of our doctors is good friends with a highly reputable Dermatologist, she will be sending him some pictures today and get his input/see if he'll take me on as a new patient as a personal favor.

In the meantime my own doctor has been checking in with me daily, it got to the point that I was sleeping 2 hours a night. I was at my wits end with the itching/pain, I was taking 2 Claritins in the morning and a Benelyn at night, and nothing was relieving the itching. She put me on Prednisone (50mg) for 5 day course (started yesterday, was either that or lose work and go to ER) , as well as Keflex for 10 days.

The prednisone is pure magic... I have no itching and slept like a rock last night (other than a dream of being in a plane crash and cannibals chasing me over an island hahaha). Got up this morning with no joint pains etc.


As for the mouth/tongue/head tingling and burning (some days it's a buzzing through my entire head), I'm now being sent in for an MRI (up to a year wait). My doctor is concerned that some of my symptoms sound related to MS (I doubt it myself, but I'm not a doctor, just an assistant lol).

I'll post new pictures of my lesions when I get home, I can't from work.



The blisters pop as I'm tossing and turning in bed, or while rubbing against my clothes, so I couldn't' tell you (I'm sorry). THe best way to explain the blisters is that it starts as a single small red itchy raised patch... THen it grows outwards int a circle, the blisters boardering the lesion.

Last edited by Tamara733; 03-31-2017 at 01:03 PM.

 
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Old 03-31-2017, 02:15 PM   #11
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Re: Seronegative Rheumatoid Arthritis - and then some

Tamara, my lesions were just blisters, if you know what I mean: a raised fluid-filled area, sometimes high as 1/8" to 1/4" and sometimes as large as a nickel or quarter. Meaning no red central area surrounded by blisters. If I see anything more while reading, I'll definitely share. I hope you get ANSWERS, not just "results". Hang in there!

 
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Old 04-05-2017, 01:41 PM   #12
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Re: Seronegative Rheumatoid Arthritis - and then some

Hiya. So finally got the biopsy results. (and the Prednisone cleared it up nicely... I'm just going through the icky withdrawls of the burst dosage.. yuck!)

"The epidermis shows mild spongiosis, hypereratorsis and serum crusting. In the underlying dermis there is mild perivascular lymphoplasmacytic inflammatory infiltrate with occasional eosinophils. Fungal organisms are not identified. The findings are that of a spongiotic dermatigtis. The differential diagnosis for this morphology includes entities such as allergic contact dermatitis, other eczematous dermatitides or a drug reaction.".


A follow up with my rheumatologist says that this is completely unrelated to the Plaquenil that I'm on (the reaction would show up as a different form) as well as it starting prior to me starting the medication.

My own doctor believes it's a nasty acute form of eczema.

I follow up with the dermatologist at the end of the month, who can look into it better.

 
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Old 04-06-2017, 03:03 AM   #13
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Re: Seronegative Rheumatoid Arthritis - and then some

Good morning. Appears that spongiotic dermatitis is actually defined as a particularly nasty form of eczema, so that seems to fit your GP's explanation... Anyhow, I'm glad you got this issue figured out. Hopefully knowing will help you determine the environmental (incl. food) trigger(s) that unleash it, also the particular med(s) that best control it. I'm especially glad to hear that Plaquenil isn't a suspect, because it helps so many patients without conferring the greater risks that steroids & immune suppressants confer. Let us know how your derm follow-up goes. Hang in there, ok, and good luck!

 
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Old 04-06-2017, 08:04 AM   #14
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Re: Seronegative Rheumatoid Arthritis - and then some

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Originally Posted by VeeJ View Post
Good morning. Appears that spongiotic dermatitis is actually defined as a particularly nasty form of eczema, so that seems to fit your GP's explanation... Anyhow, I'm glad you got this issue figured out. Hopefully knowing will help you determine the environmental (incl. food) trigger(s) that unleash it, also the particular med(s) that best control it. I'm especially glad to hear that Plaquenil isn't a suspect, because it helps so many patients without conferring the greater risks that steroids & immune suppressants confer. Let us know how your derm follow-up goes. Hang in there, ok, and good luck!
You might want to ask to have vitamin B12 and folate levels checked on your blood, as b vitamin deficiencies can cause tingling and burning in mouth, tongue as well as other weird neurological symptoms like dizziness. It is easy to correct. Betamethosone cream (rx) is great for small areas of eczema if it rears its ugly head again. Glad you got relief!��

 
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Old 05-05-2017, 10:42 AM   #15
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Re: Seronegative Rheumatoid Arthritis - and then some

Do you have severe cracking / popping in ankles at night? I do. I'm positive ANA, but negative on RA, and negative on Lupus, etc. They have no idea what my issue is. I've had it many years, getting worse.

 
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