All our previous mis-diagnoses | Arthritis Information

 

Some notes on the board today about our diagnoses with RA, FM, etc.  Got me thinking about all the mis-diagnoses I had before they finally settled on RA.  I too felt like my dr. must think I was a hypochondriac, but I they were all real to me so hauled my hinny into see my dr. every time.

So here's my list of symptoms and mis-diagnoses, what's on your list?

*  painful big toe and feet (fallen arches ... gee, I was only 34, that shoulda been a hint it might have been something else)
*  swollen lymph nodes (no diagnosis, but "gee that just happens sometimes")
*  years and years and years of lower back pain (ankalosying spondolitis ... but we just suspect it from anecdotal evidence and disregard the positive RF test result ... after all 20% of positives don't mean RA)
*  pain in wrist (suspect carpal tunnel, but negative on nerve conduction tests, so not that so no answer)
*  hot, swollen knuckle (gee, even though we know you are RF positive, it must be tendinitis because its not symmetrical)
*  pain in neck and shoulders (muscle strain)
*  years of exhaustion (blood tests, but no answer)
*  stiff, sore knees after sitting for hours at work or at a movie (normal aging ... again, I was in my early 30s)

Diagnosis of RA finally came after being barely able to walk on my tender tootsies and a hand that was swollen-up so fast that within a couple of hours I couldn't  use it.

Anywho, it's amazing hindsight really is 20/20.  I don't blame my docs for the misdiagnoses as RA looks like so many other things.  Just nice to look back and think every trip to the dr. was a worthwhile trip.

What's on your list?
Joy2008-03-24 15:56:42When my initial symptoms (pain, swelling in small joints of hands and feet, feeling of malaise) did not resolve after a few months of NSAIDs and a couple of Medrol dosepaks, my regular doc shrugged his shoulders and said I should go see a rheumatologist.  The rheumatologist diagnosed RA on the first visit, even before labwork and xrays.  All labs came back negative; an MRI a year ago during a flare showed inflammation and swelling but no damage. I was pretty lucky. I had a number of years in middle and high school where the dr.'s kept saying "something inflammatory". When in college I ended up being diagnosed on my second visit the the RD. My first was the bloodwork/Xray visit. Apparantly my feet where the give away. I had been playing rugby and I had just finished complaining to my roommate that my cleats didn't fit. It was like they shrank overnight. Turns out my feet were super swollen. I knew something was wrong. Morning classes were incredibly painful to get too. I think I would have been dianosed sooner if I hadn't been playing sports all growing up. I always had something swollen or inflammed. I did have an athletic trainer in college say that my inflammation didn't match my injury.

I really feel for people who play the diagnosis waiting game. I can see how you would start to feel like it was in your head. Frustrating....Mine was always depression and faking verifiable symptoms to get pain killiers.  Mine came on so sudden and severe it only took a couple of weeks. After ruling out the Lyme's, Lupus, Parvo, etc.. the RF factor stayed negative but I had very high sed rate, and extremely high levels of inflammation. Then it finally showed positive and I was swelled up like Shrek with joints so painful & hot they sweat.

my first visit the doctor I received a diagnosis of possible lupus probable RA.  RA it was

 

Thanks for all the responses.  It really is interesting to see how different RA is for each of us. And it's really great that so many get such quick diagnoses.
Joy2008-03-24 17:06:32One more thing... my RA is pretty mild compared to most here, and for that I am eternally grateful.  Even if I have a nasty flare, a simple medrol dosepak can break the pain in a couple of days. I still get a laugh every time I went to the orthopedic doc complaining about my knee. Couldn't be bothered. Less than a week later I was trying to exit the bus and couldn't straighten my leg. I had othro on it shortly thereafter.

I still don't have a diagnosis for anything other than arthralgia and possibly a herniated disc; here's what I do have
Morning stiffness that lasts all day.
Hands, wrists, elbows, knees, hips, lower back, neck and shoulders in varying degrees of pain with and without movement and in inexplicable variations much of the time.
A nodule like bump on one big toe and redness on another toe joint, some of my toes look a bit crooked. I wear supports in my shoes--dead duck without--my arches have hit bottom.
Feet, ankles that swell on a regular basis. Mostly pain free but my feet and ankles are starting to get grouchy.
I don't seem to have any redness or swelling otherwise. My bloodwork is negative.
I can't stand for any length of time and couldn't get out of bed last week.
I feel pretty crummy about half the time.
Must be in my head.
Mine is too, JR.  Even though it took years to progress to the point they could diagnose it, I have no damage and it has been fairly manageable on the basic DMARDs.  I'm very grateful too.   Ya mab52, that sure sounds like RA.  Do you have an appointment with a rheumy lined up? to make a decades long story short:  I had single joint JRA at age 10, I always "thought" the pains in my knees all these years were similar.. I didn't have any flares til recently except once about 15 years ago in April when I couldn't get out of bed and everything hurt and was swollen.  The doctor said it was a virus.  *rolleyesintobackofhead*

I feel lucky about my condition too. My RD even commented that he can't believe how severe I was at my first visit (He was my 2nd opinion 7 weeks from onset) and how well I turned around. I believe it was a divine intervention myself.

My symptoms, some confuse doctors, i have dairy allergies, but this also happens without dairy, just lower lvl. justsaynomore -- wow, how horrible.  They wouldn't believe your pain and simply attributed it to drug-seeking?  That's just horrible -- to not only be disbelieved, but to be denied such necessary treatment.  I do hope you are feeling well deserved relief now.

babs -- you must have felt extreme relief in November to finally get a real diagnosis.  Amazing how RA presents as so many other things -- not only muscle strains or stress, but as virus symptoms too.  Remarkabe how your JRA history wasn't fully considered in your flares.

wantobeRAfree -- wonderful to know that a really server onset can have such a dramatic turnaround.  Truly reason to be thankful. :)
Thanks bubbagump.  We're getting a good list of what RA can be!  The "no morning stiffness" one is interesting in that it contradicts the standard question the rheumies ask.  Important to know that you can have RA without the "standard" symptoms.

I forgot the add "weight loss" to my list.  I thought it was cutting down on carbs, but I think I can rack it up to RA.  Hmm, shoulda gone for that last 5 lbs before I was dx'd .... ;)
[QUOTE=Joy]Ya mab52, that sure sounds like RA.  Do you have an appointment with a rheumy lined up? [/QUOTE]

I've been to one twice, if anything shows up on the X-rays I will schedule a third. Otherwise, I might just have to see about faking being healthy enough to hold down a job. I can't afford much more time off.

Assuming my Fibro and RA diagnoses are correct (!) then I was fortunate enough to have them from the start.  My rheumy diagnosed the Fibro within 2 visits, but when I started getting other symptoms years later, it took longer on the RA.  In part because we had to determine that it was not just the Fibro and in part because my rheumy is especially thorough, so the RA diagnosis took almost 9 months to confirm.

Well, over the last two years I have been diagnosed with:

1) Glandular Fever or infection
2) CFS (60% of people who are diagnosed with CFS go on to develop RA within 2 years)
3) Fibromyalgia
4) When I was not getting better and still complaining of being sick - depression manifesting as unconscious malingering for sympathy. That did not explain the fact that I was urinating blood! I quickly fired that doctor!
5) A UTI (false positive)
6) I kid you not - a narrow urethra! And with my big old ovarian cysts, that apparently "explains" the level of white blood cells in my urine.
7) Localised nerve damage/carpal tunnel syndrome
8) Sciatica
9) Spondilyathripathy

10) and finally... a correct diagnosis of RA. _popupControl(); Joy - it's because I was disclosing to all my physicians in my opening paperwork that I am a recovering alcoholic.  You immediately get branded as a "druggie".  My advice now is not to mention it until you get a diagnosis, which is so stupid and potentially dangerous it's stupid, but it was finally how I got the proper testing.  Afterwards, I would tell them for medication purposes.  If I didn't have the chart notes, the letters, and my husband as backup, no one would believe me.  I had two separate doctors who would come in and say things like "how's my favorite drunk today?" or "too bad I can't tell you to go home and have a drink to get that pain to go away".  I was smart to always have my husband accompany me.  I blew through 42 doctors pretty fast.  And I know now I drank because of the pain.  I also quit on my own 17 years ago.  I could kick myself for even telling them.  justsaynoemore2008-03-25 03:52:29Well, my current diagnosis is still not written in stone, but it does seem to be the cause of my problems.  It started several years ago with chronic arm pain that the doctors thought was being caused by the degenerative disc disease in my cervical spine.  That may have been part of the problem, but when the leg started to be affected as well as the left side of my face, they kept thinking MS.  I also lost the hearing in my left ear during that time but no one made the connection.  It wasn't until I was referred to a wonderful neurologist at Wake Forest that I finally got some answers. She was supposed to rule out MS (again) but she asked many questions and did blood work.  No one had done blood work before.  The positive results were the beginning of the treatment I now have and which helps with many of my symptoms. justsaynoemore, congrats on your recovery. My sis has been sober 19 yrs and my brother for 6 yrs. It's quite an accompishment.

Hi, I'm new!  Thrilled to find this board. :)

Heeeeeeeeeeyyyyyyyyyyyyyyyyyyyyyyyyyyyyyy


I'm a Katie G too!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi! :)  Wow, what nationality is Giannasi?? I can't figure it out. Mine's Groth, it's german..but at some point it was butchered and shortened so who knows what it really was to start with!




To answer you, that's RA. I think for JRA you have to be under 16? I could be wrong. I was dxed when I was about 2ish.
You sound like you have what i have. And oh my. My swollen ankles dx as maybe phlabitis or unknown. Swollen knees must be swelling from lower back as i had buldged disk. Carpul tunnel and sprains dx for wrist and hands and elbows. For upper T spine and shoulder swelling must be OA combined with ware and tear and oh yes birth defect as i have a nodual or smores node. That does not cause swelling. Barrettes esophogus scince young age, very rare doctor stumped. Vertigo temporary hearing loss, chronic imflamation of ear drums for years. Do not know but it is something else dx. Imflamatory bowel disease dx. Asthma. Feet and toes well now the lady is just being a pain. Hips that have been swelling scince i was 19 and snap crackle popping all they way. Well your lower back and buldged disk. Yes but the disk did not buldge till just before my fortyth birthday so get real. How can a problem you have had for twenty years be caused by newly buldged disk? Oh you have fibro!! This is why you can not lift either arm for three months. Foot drop. Fibro. And of course non compliance as i took the fibro meds for years with of course no relief and complained i was to tired. Hypochondriac with depression that must be it. Skin problems and noduals. Old age dx. Loss of menses at 39 coupled with raised liver enzyems. Maybe a mistake at the lab? All of the above at the same time. Plus had my gallbladder removed and a huge ganglion cyst on knee and and cyst in breast all at the same time. And the room was spinning and i was sweating and fatigued. Lets change your high cholesterol meds maybe it is carbon monoxide piosoning. Black sout came out of my heater as a tornado a few months prior had flung a brick into the heater. Alright what about the last twentyfive thirty years? Picky lady wants to know everything. It is stress thats what it is. Alright so that is when my blood work showed nothing. Yeah JRA you are dx before 16. I was dx at 10, but had symptoms for a long time. For three years they said the pain was because I was, double jointed, depressed, hypocondriac (SP???), Faking it!, over weight (I was over weight as a kid probably from not wanting to move because of the pain dah!), OA (yes at ten they thought I had OA), SA, and then finally JRA, and about six months later Fibro. I had one of the 6 rhummys i have had say that my double jointed fingers and elbow made me more prone to ra too.  I think she is full of hogwash.It's Italian!  My husband is Italian though, not me.  I'm mainly Scottish, Irish & German.  My mother's maiden name was Impink! I think it was originally Emping, and maybe more Dutch than German. For years I was trying to piece together what was wrong with me, but RA was never on my radar, and I guess my bloodwork was always negative.  But it started in college, around 19, not as early as 16. Then you have just plain ol' nasty RA, my friend! LoL Oh, no! Another Katie!! AGGGHHHH!! *attempts to run with hands waving in the air* Yeah I have to apologize Katie, I may have ruined our name for us. Here's my history:
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