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The SPECIALIST'S OFFICE => Rheumatoid Arthritis (and its variants) => Topic started by: rhea on July 21, 2002, 11:15:33 PM

Title: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 21, 2002, 11:15:33 PM
Hi Everyone,

I was visiting my relatives last weekend and we were discussing various family ailments. One thing that kept cropping up was that a lot of them are classified as auto immune diseases. My mother mentioned that her boss was talking to a lady who has rheumatoid arthritis in her knee. Her RA didn't show up on any tests but it responded to treatment for RA. This ladies symptoms are very similar to mine so I did some research. Sometimes my hips, lower back, and wrists ache. I attributed the hip and back pain due to limping and the wrist pain as a result of using my cane and crutches so often. Im tired a lot, but I chalked that up to the Tylenol 2 Codeine stuff Im taking. After this chat I had with my relatives I did some research on RA and it sounds like it could be a possibility...even though my bone scan/blood pooling and blood tests came back negative for it.  The symptoms of RA according to arthritis.com are:

"inflammation of joints, swelling, difficulty moving and pain. Other symptoms include:

Loss of appetite
Fever
Loss of energy
Anemia
Sometimes rheumatoid nodules (lumps of tissue under the skin"

I read nodules under the skin part and I have 3 of those!  I've got one large one (about 1 inch in diameter) and two others (both on my neck) about the size of a green pea that like to hide.  
 
My mom is sure I have it because when I go swimming in cold water (ie a spring fed lake) the joint closest to my finger nail on my index finger on my left hand really hurts.   So anyways we got out my Sis's nursing text books and YIKES!!  Umm....a lot of my symptoms match up!   And we found out that 20% of people with RA don't have it show up on lab tests.  And another thing...my hands!!  My middle fingers on both hands are a bit deformed.  Like the joints closest to the finger nail bend up and twist laterally.  Its only noticeable if I hold my fingers straight and compare them.  Another thing my mom and I read was that prolonged inflamation caused by RA causes the folds in the synovial lining to become inflamed and they are sometimes taken out surgically.  And all this time I have been 100% sure I have plica syndrome!!  Well after reading that it sounds darn possible I have RA (going into my 6th year of knee pain in Sept) and that the plica in my knee are inflamed, only from RA.  

Yeh, anyways I am kind of scared and worried right now...  My  parents have had a few talks between them already about relatives with RA... My mom is willing to bet the house that I have it.  God, what if I have it!!  What will I do than!   I don't want to be a burden on anyone.   :'(  How am I going to survive in university like this...   Okay, enough whining outta me.  I guess its my turn to ask for some feedback and support.  

Thanks everyone

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Iona_-Uk on July 22, 2002, 01:09:38 AM
Hi Rhea

I was in the same sitaution as you 5 years ago and I was diagnosed with RA because I had all the symptoms you had and although  nothing showed up on blood tests or bone scans I was referred to a rheumatologist who put me on a drug call Meloxocam (mobic) which helped substantily.

I had an arthroscopy on my right wrist 2 years ago and they saw some boney changes but since then I have been fine. My last two toes on each feet are curled but luckily it hasn't affected my knees and I'm still on mobic and I have found the effect to be great.

iona
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 22, 2002, 08:57:56 PM
Thanks Iona for your reply. Im really hoping I don't have this disease!  I don't want it looming over my head all my life.  I've decided not to mention it to my GP and to just deal with knees right now.  I'll tell Dr. Fowler if he asks if my other joints hurt, but Im very certain I have other stuff going on in my knees.  We will have to see....

Thanks for your reply Iona!  Jeez, all of these stupid tests we go through and they stilll don't really rule out anything!!!

byes for now

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Stacey on July 23, 2002, 12:54:29 AM
Hi Rhea

I may be mistaken but cant they do a blood test for that? I would ask your GP about it so if you do have it you can get treatment for it now instead of waiting a few months to see Fowler.  That way if you can get the arthritis down you will be able to tell if you do have other knee problems or at least be able to give more specific details about what is going on.  Im not sure but Fowler is a sports medicine doctor he might not even think of this while looking for a diagnosis.  Just my two cents :)  Hope everything goes good.  Plus the sooner you get  this checked out the sooner you wil be out of pain and the less stress you have in your day to day life.
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 23, 2002, 01:25:38 AM
Hi Stacey
I had my blood tested for RA and have had a 3 phase bone scan all came back as negative.  However 20% of people have the tests but don't  have it show up on them.  Just really weird I guess.  I found out that RA causes plica syndrome and maltracking in the knees.  Im hoping Dr. Fowler will do an arthroscopy to explore all of this so I can get to the bottom of it!!  

How are you doing these days Stacey?  Are you sleeping better?  I hope your knee is behaving better at work these days.

Byes for now!

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Stacey on July 23, 2002, 05:43:41 AM
Hey Rhea
Hopefully Fowler will do a scope for you and your wait wont be too long.  My knee hasnt been improving, cant make it through a week at work i usually last 3 days (27hours) then have to take 4 days off.  Sleeping hasnt gotten better either but hey the brace comes off in a week so hopefully ill be able to get some sleep then.
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Deborah on July 23, 2002, 07:03:52 PM
Rhea,

If you have RA, there are many new treatments that have come out over the past few years that allow the patient to achieve remission and to stay in remission longer.  If you are convinced you have RA, ask your PCP to re-run the Rheumatoid Factor and ANA (anit-nuclear antigen) with the most sensitive testing available to him.  I'm sure Toronto Sick Children's Hospital has the most sensitive tests and is state-of-the-art for diagnosing and treating juveniles with this disease.  Another possibility is Juvenile Arthritis, which would indicate why your RF was negative last time you were tested.

Good luck to you.
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Iona_-Uk on July 23, 2002, 07:42:47 PM
All my tests for RA wre negative it was just by a chance x-ray that the rheumatologist thought I might have RA- he had a an x-ray done of my hand and there was minimal evidence to support the theory he had- which was I had the beginings of RA.

Most of my bloods were normal and a bone scan inconclusive. He did say he prefers to diagnose on symptoms and not just tests so in that respect I was lucky and I have responded to treatment.

Rhea- if it is bothering you then you must must go and see your GP, it's too important to leave, believe me, you can get on meds and you will notice improvement, you MUST go to the GP if you think you have RA, you're equipped with the knowledge, don't take any messing and get this sorted.

Iona
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 24, 2002, 12:46:33 AM
Thanks Deborah, Iona, and Stacey for your replies!  My GP is the total opposite of your DR Iona. He goes 100% on tests and numbers.  If I did manage to wrestle a refferal to a rheumatologist out of him, he'd most likely cancel my appt with Dr. Fowler on me.  The pain in my wrists, lower back,hips, fingers, and this morning ankles, is not nearly as bad as my knee pain.  Just always aching and twinges.  If I had a reasonable GP I would be sure to see him.  But I don't think I can tolerate another verbal abuse session and risk losing this precious appt with Dr. Fowler.  My dad agrees with me (he's been with me at my GP appts) and thinks we should wait and deal with this whole RA thing after my Sept 11th appt.  My mom is all to happy to get me off to the GP and try to get an appt, but she's seen what happens with this guy.  I will get this whole RA thing investigated with a good rheumatologist....  But first I think Im going to deal with the knees.

Thanks a bunch everyone!

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Grace on July 24, 2002, 04:41:03 AM
Iona...i have been on mobic for about 5 months...since before my surgery and now after it, and it has done nothing for me!  
I guess its just works for some and not others.

Rhea -- make sure you acctually get a diagnosis of RA before you freak out.  My mom is 60 years old and about two years ago they diagnosed her with RA....but luckily thats not what it was.......don't really know exactly what it is....

You could maybe have something call fybromyalgia...seems alot the same as RA.    If you want some info on fybromyalgia i'd be glad to send it to you
just let me know!

hope you are doin better today          hugs- Gracie
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 24, 2002, 07:01:06 AM
Hey Grace!
I did a lot of research on fibromyalgia.  It doesn't seem to fit.  I mean I don't have pain in the key areas and my type of pain is a bone ache, not like a muscle pain.  But good thinking on that suggestion!! Geez Grace you are on the ball girl!!  Im not saying I do have RA, but I think that it is a very very definite possibility.  There is a strong genetic factor running against me too.  And if I have it, it'd be classified as juvenille rheumatoid arthritis, which would explain why it didn't show up on any tests.  If this is it than I think I had it between the ages of 7 and 10, went into remission, and than when I got really sick when I was 12 that illness brought it out of remission.  I would wake up in the morning as a kiddie and my ankles, or my wrist, or whatever would just really be aching badly.  I'd complain to my mom and she'd tell me that's because I didn't have enough calcium and to get drinking my milk.  I also broke 3 bones (both arms and left wrist) by only a fall on pavement at school, on the driveway, and down 10 carpeted stairs.  I mean most kids do that 10X over and only get a scraped knee or bruised elbow.   I'll take your advice and not freak out  ::)  I'll continue taking my days one at a time and see what this doctor brings.  And Im thinking about going to see my wonderful naturopath and get her to let me try an immune booster, and get me a refferal to a rheumatolagist.  I dont' know if naturopaths can reffer or not....but it's worth a shot if I can avoid my GP!!

Thanks Grace and everyone else!!  I don't know how I would manage without you all!!  

(((hugs)))

rhea

ps, In regards to sick kids in toronto...  Being 17 they would most likely not take me, even though what I have is likely a disease they would deal with (JRA as opposed to RA).  They are so backed up and overcrowded they have basically cut off taking on anyone past puberty and say to see an adult doctor.  Frusterating, but thats the way it is.  And just in case you guys are wondering why I haven't gotten a new GP.  Well I can't!!  We have a GP shortage and no one is taking on new patients.  New families to the city have to make due with walk in clinics.  In a year I'll be moving outta this city and maybe I'll end up with a better doctor!
 
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 25, 2002, 09:40:03 AM
Okay, so guess who found a way to get around my GP! ;D  Yeah leave it to me to reffer myself to canada's best OS, diagnose myself, and now get in with a rheumatologist all without having to deal with the "big bad GP".  I talked to my naturopath today and she thinks I have JRA.  She gave me an immune booster to try which has helped a  few people I know with RA and told me she is going to try her darndest to get me in with a good rheumatologist.  She'll let me know what she was able to do the middle of next week.  Now THATS someone I wish was my GP!  Not only was she so understanding she's actually concerned for my well being.  If I had done this same thing through my GP I would have been blasted for not telling him about my other aches earlier, either that or he'd imply that Im just making it up.  

Thank you everyone for your thoughts!  I'll keep you updated on how I make out.

Byes for now

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Lori on July 26, 2002, 10:39:27 PM
Rhea-
Well I'm glad your finally getting closer to figuring this out! I really hope that when we talked about this when you first thought of having RA I made you feel somewhat better and calm about this. Well Rhea...I have some bad news for you...and I am going to need some calming down as well!!! They think I have RA too!!! Went back to the id doctor this morning still with persiistent fevers and flu like achiness...which has turned more into joint pain!!! RA can cause a fever for that long. He is sending me to the rhumatologist...but guess what?? yeah the reccommended one decided to go on a month long vaca while i sit at home sick missing my vaca with the  fam...what else is new??!! So i cant get into her till sept...but we r going to try to get into a different one.

I have had the blood test for RA well over a month ago..which turned out negative...my dr too goes by tests and numbers..ggrr!!! I have not had the bone scan though. I now have pain...its been gradual but started to get more...in my knees ankles (radiating throughout my shins), my hips, shoulders, hands, wrists, fingers, and lower back. Along with one of the other main symptoms...persisitent fevers (mine of which have been of unknown origin for 10 weeks!!!)

If you say that RA can cause plica and maltracking....well maybe that could have contributed to my knee probs (besides injuries of course) i've already had my plica taken out in my left knee, LR, and recently the TTT all for maltracking!!! My right knee is still a apin in the ass!!! Tell me....my joints are stiff, weak, and achy, is that how you feel?? I am going to do some more research on the disease.....you know me....dr to be always doing med research LOL!!! I will give you any info I find...and if you can do the same for me..I would appreciate it.

It has been so long of trying to fit the pieces of the puzzle together and it finally seems like they all fit...and although I don't want to admit it to myself..I feel as strongly as you do about this being a possibility for finally a diagnosis!!! Being 17 like you I am terrified of the thought of having this..but like everyone has said there is treatment..so we will be fine no matter what happens!!!

Well I just wanted to let you know that not only are you not in this alone from the support perspective...but you have someone the same age as you who may be going through this as well!!! Take care girl...and let me know how everything is going. At least i'll be living at another dr's office for awhile!!! THe id dr also told me to go to a neurologist b/c of the numness and tingling I have been getting and headaches..lets see now...GP, PT, OS, ID, GI, Gyn, Neuro, and Rheumatologist...DAMN!!! The story of my short 17 year life!!! LOL

(((HUGS)))
Lori

P.S. I just found out my grandfather had RA..he passed away when I was in first grade though. (Don't worry it was from Hepatitis C)
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Lori on July 26, 2002, 10:43:01 PM
Oh yeah...and loss of energy...loss of appetite...that fits in there too!!! Do your nodules stick out..or can you just feel them?? I have a couple bumps in my neck..and one big one on my shin...all have been there since my neck surgery 8 months ago. I get swelling in my hands and fingers occasionally..always thought i was from too much salt even though i dont have a lot. And my feet seem to be really swollen at night!! okay thats it for now!
(((HUGS)))
Lori
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 27, 2002, 02:01:30 AM
Hey Girl!
So sorry to hear that you think you may have it too!  AGH!!  And I got an email from a girl like us who thinks she is getting the begginings of RA.  Okay Lori, get this, JRA (juvenile rheumatoid arthritis) DOES NOT and I repeat DOES NOT show up on bone scans, blood tests, x-rays etc... for over 1/2 of people who have it!  Crazy stupid or what?!?  

As for my nodules, they don't stick right out.  Mine aren't very boney either.  Just hardened ball of soft tissue.  The two on my neck are the size of a pea and like to hide.  The one on my back I can move around a bit and I can usually find quickly.  

Now the pain I have in my joints ( :o :o15 joints all together!!  Nine if you leave out the 6 fingers! :o :o ) is an achey stiffness/soreness.  Very achey with occasional pangs.  My wrists create a lot of cracking noises when I bend them.  But if I don't bend them they get more achey.   My ankles will make a popping sound too when I flex them (point my foot down than point it up creates pop/snap)  As I mentioned before 6 fingers (especially middle) are deformed in the way the joint is.  

Lori try doing some research on "Systemic onset Juvenile Rheumatoid Arthritis".  It "begins with very high fevers, frequently as a skin rash and shows evidence of inflammation in many internal organ systems as well as the joints. "  Because I have pain in more than 5 joints, if I do have JRA I would have the "Polyarticular" form of it.  

Check out this link:
http://www.allaboutarthritis.com/arthritis.cfm/about/288/Types%20of%20Arthritis

It has a lot of good info on arthritis.  And go to
www.arthritis.org  and look up JRA.  

Goodluck at the Rheumy Lori!  You might get in to see one before me you know!  My naturopath is trying to get me in with one asap, but with our fabulous canadian health care I'll probably have to wait 3 or 4 months.  In NS the wait is 2 yrs to see one!!  

Bye byes for now Lori and get researching!

rhea

ps, If you want to know, the joints that cause me pain are:

KNEES (yeah Duh!!)
ankles
hips
lower back
wrists
middle, pinky, and index fingers on both hands

Hey, at least my shoulders, neck, and elbows don't hurt!!
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: The KNEEguru on July 27, 2002, 02:08:22 AM
Keep in mind that one can have common knee things at the same time as uncommon autoimmune things ...

An anecdote - for what it is worth ...
Many years ago, in England, as a young doctor, I was familiar with some rather obscure research about RA being caused (maybe 'triggered') by what seemed to be an infection, and at the time it was mooted that this infecting organism might be an amoeba. It seemed that frequently a perfectly healthy person would suddenly have an acute flu-like illness, then inflammation of multiple joints, and then much later the type of joint destruction of RA.  This was largely poo-poohed at the time, but other people became interested and started to look at other rather unusual infecting organisms, like rickettsia.
I had worked in Africa, where tick-bite fever is common, and was familiar with rickettsia.
Anyway, to cut a long story short, one day, out of the blue, I woke up with the small joints of all my fingers and feet swollen and painful.  I could not remove my ring. My ankles pained so much that walking to the bathroom was miserable. I felt flu-ey.  Everthing in me screamed 'RHEUMATOID ARTHRITIS'!
I put myself straight onto some metronidazole (which I had in the house at the time) and which is used for the  type of infection I have been referring to.  Within two days I was fine.  Several weeks later, I bumped into a friend, who told me that at about the same time she had had a similar episode and now she had been diagnosed with RA.  
I told her of this theory, and she bullied her GP into prescribing the metronidazole antibiotic, too.  Everything settled down so rapidly that the GP's nurse phoned.  She had also had the same problem at the same time, and had very rapidly progressed to deformity in her fingers and wrists.  She also took metronidazole and also had a sudden remission.
Don't take my word for it. Read up about this and see if it is substantiated.
I had a second bout some years later, did the same thing, and again it settled.
Anecdotal - but still ...
Postscript - the doctor first describing this said that often people have a day or two on the antibiotic where they feel worse, and then the improvement is often dramatic. I cannot remember his name - he was a professor from the UK.
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Lori on July 27, 2002, 02:17:02 AM
Well Rhea...I get the same popping/cracking in my ankles. I am stiff and sore all over!!! Hands, fingers, wrists, elbows, shoulders, hips, ankles, knees, neck, and back!!! Little bit in the toes....My fingers and hands are especially weak and achy these past couple days. I also get the sharp pain sometimes in between the sore and achy. They already ruled out JRA b/c I had no rash and no high fever...just low grade. Whats the difference between JRA and RA anyways?? I have never had bone scans or x-rays for this. Just the one blood test that comes out negative for 20 % or 40%...figure which one...of people who have RA. I dont know why I never thought of it before...but my neck pain has been the longest...I always thought it was from my bad posture...but maybe not. There is also a possibility of being fibromyalgia. Obviously for the last 10 weeks I have had the malaise (def not feeling right) with the low grade fever...stiffness,etc... We called my GP to see if he would get me in earlier to the rhumatologist. He is going to call tomorrow and see. Although fibromyalgia can be cause by physical trauma to the body...possibly 4 surgeries in two years could do it...one being a MAJOR knee surgery and one being an extremely MAJOR neck surgery. I will look up the info you sent me though. All the rhumatologists are booked till sept and oct...one got me in at the end of aug..right when school starts..ggrr...so hopefully i can get in earlier!!! I'm sorry you have to wait so long!!! Well keep hangin in there and keep researching...LOL...what summer fun!!! Only 20 days till I move out...aahhh!!! :)

Take care girl!
Lori
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: khaoskat on July 27, 2002, 08:49:22 AM
Rhea:

Check out the following site.  You might have to scroll down through some of the stuff, but it has some RA sites.


Khaoskat

http://owl.orthogate.org/orthpat.html#Knee%20Problems
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on July 28, 2002, 02:40:59 AM
Thanks KNEEguru for your reply!  Im doing some research to see if I can route up anything more on that.  I emailed you too about your post and concerning some problems new users are running into trying to become a member.

Khaoskat, thank you for the great link!  Lots of  good stuff there!  Thanks again and I hope your hamstring is feeling better!

Lori,  I would do some research into fibromyalgia.  Im glad to hear they ruled out JRA for you.  That's a GOOD thing.  I hope they hurry up and get you diagnosed and fixed up though!  Boy.....

Thank you again everyone!  This board is so wonderful and supportive...I dont know what I'd do without it!

rhea
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: TimJ on August 02, 2002, 03:24:12 AM
Hi Rhea-

Unfortunately, I might be in the same boat as you...I see a Rheumatologist on Aug. 13th, so I'll find out then.  My fourth OS, after actually listening (what a concept!) asked if a rheumatology workup had been done...I looked at him like he was crazy and said no (I'm only 26 - too young for arthiritis, right?) and he was amazed.  Not excited by the prospect, but it would be nice to know what was wrong...good luck!
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: Shazinoz on August 07, 2002, 03:14:58 PM
Join the Club,
I have had Juvinile Rheumatoid Arthritis since I was 12 and yes it can be tested for with blood tests (ANA and CRP)etc.
I also have a family history of autoimmune diseases such as Raynauds (which I have), Sjogrens (Mother), SLE - Lupus (Grandfather and Mother), Cryoglobulanaemic Vasculitis (Mother) and I am sure there are more too. My JRA was in my sacro-illiac joint of my right hip.
I also have an Ehlers Danlos type hypermobility connective tissue collagen disorder and RSD (aren't I the lucky one !!!!!!!!!!)
Title: Re: Oh Crap!!  I've got Rheumatoid Arthritis !?!?
Post by: rhea on August 07, 2002, 10:11:28 PM
Sorry to hear that you are suspecting RA to be the root of some of your problems TimJ.  I still haven't been able to get into a rheumy.  My naturopath is working on it but, as always, there aren't enough of them to go around.  GRRRRR I hate this!  Yesterday my knees were so bad I had to take 3 tylenol 2s, and that still didn't do it so I had to take 2 toroadol as well just to take the edge off the pain enough so I could sleep.   I hope you get into a rheumy soon.  Don't worry, if it is RA there are many effective treatments and drugs out there.  They're making more progress in RA than in any other disease!!  

Jeez Shazinoz!  You've certainly got more than your share of troubles!   I hope you get all of your ailments under control.  Does your hip still bug you?  From my research on JRA, over 1/2 of people who have it don't have it show on blood tests or bone scans.   And for adult RA 20 percent of people don't have it show.  So I guess all of these tests my Drs. place so much faith in aren't that great afterall.  

Goodluck in getting your health sorted out.

Thanks again everyone!!  

(((hugs)))

rhea