X post -27yr old Newbie 1st rheumy appt was today!

Princessdwarbie

Hi all

I'm a newbie here! I'm a 27 year old female and have 4 children with my
Fiancé (getting married may 2014 yay)

So today I had my first rheumy appt after being reffered by my G.P
having presented red knuckles on my right hand and raised inflammation markers on two occasions.

Let me start off by saying my Mum has R.A & Fibro, my Nan (Mum's Mum) had R.A and my Auntie (Mum's Sister) died from SLE at 36!

I've had pain in my left wrist, top of right foot, back of right hand and also occasional knee aches and stiff hips walking up stairs & in the morning!

To start I had bloods taken for:

ANA - Neg
CRP - Neg
PV - 1.80 (normal upto 1.72)
RF - Neg
Lupus (SLE) Neg thank god!
ESR - Raised

Then had X-rays which showed low to zero damage, inflammation!

So, today at my 1st rheumy appt he checked my knees, hands, wrists & feet etc and said I deffinatly have some kind of arthritis in my hand?!

Reffered me for an ultrasound of my bones/joints and 3 other blood tests (the only one I can remember is CCP)

I now have to see him in 8wks time when the results from the U/S and bloods should be back :S

What do you think will happen if it comes back neg? I don't want arthritis but don't want to be dismissed as its early only to find later on I could've received treatment earlier but didn't!

Thanks

lizzy100

its interesting your CRP was normal. my bloods were always normal and scan was normal, it can still be arthritis. it can take several years to show up in investigations which is why it takes so long to diagnose in people. it sounds like thats what theyr thinking anyway, so doubt theyd be disuaded.
oh CCP is for rheumatoid aswell

frogmorton

Hi Princess

A very big welcome to our forums form me - I am so glad you have foud us.

My bloods are always 'normal' too :roll: you have the additional issue of a strong family history which I don't have.

So don't worry too much I am being treated with DMARDs.

A wedding looming then? How exiting

Love

Toni xx

stickywicket

Hello and welcome from me, too. I have RA and no problems with diagnosis but, as frogmorton has said, even if your bloods come back normal, that doesn't necessarily mean you don't have arthritis. Many on here are sero-neg.

Princessdwarbie

Hi again

Thank you for making me feel so welcome, I just wanted to speak to others in similar circumstances to help with questions & answers.

When discussed with the rheumy he made me feel quite belittled when he chuckled and said he wouldn't look too much into my family history as its only a very very slight higher risk of having R.A if family had it too :S

I forgot to add in my first post that after 3 successful pregnancies, my 4th in 2010 I suffered with SPD (symphysis pubis dysfunction) and had to use crutches and have physio. Walking upstairs took 3 mins not the normal 10 seconds or so, getting in an out the car was incredibly painful and walking, well I was hobbling like an elder generation

It got better after she was born, almost right away but even now in certain positions, especially mornings, after I've been sat down my hips are stiff and not the same they used to be.

The rheumy seemed to be interested in that, Didnt say much but said 'Oooh ok' and tapped away on the computer?!

There are so many tests and results to remember I'm sure CRP was normal but I may be wrong as I've had various bloods taken I've probably got some mixed up? I am deffinatly negative for RF and ANA those I deffinatly remover and my plasma viscosity was 1.80 dr said normal was upto 1.72 so 'slightly raised'

I'm going to obtain all letters between the dr & rheumy so I have a copy, have you all done this?

He asked me what pain relief I take and I said when in my painful days and I feel like crying, I take 1x 400mg ibuprofen 3-4x daily but although it lessens the pain it's still there, he just wrote it all down.

Apparently the Ultrasound he has ordered is more specific than an X-ray at detecting early arthritis so I guess thats reassuring and I'm hoping that picks up something just so I feel like I'm not going crazy and it's in my head which is easy to feel like when tests come back as 'normal'!

I guess if the bloods/us show little to nothing it will be a case of 'wait and see'? I just didn't want to be told 'nothing wrong with you' and have to go back to my dr everytime I'm in discomfort and have redness and swelling etc of course at 27 I dont want advanced arthritis but to be so early that you may get dismissed & miss treatment is really disheartening!

dreamdaisy

Hello, it's nice to meet you and I hope we can help with information and support. Arthritis is no respector of age and whether we want it or not is also immaterial. Diagnosis can be a tortuous process if one doesn't present with the 'proper' symptoms, those who do seem to be few and far between. I would have thought that the family history was a pretty good indication of what might be going on with you but every rheumatologist has their specific way of addressing the problem.

When my problem began my then GP kept telling me things would resolve themselves: five years later courtesy of our local footy team physios who referred to me to orthopaedics they did when rheumatology finally accepted that I was indeed a member of their gang. By then I reckon it was too late for the meds to make that much of a difference but hopefully you won't be. I am sure the sooner one begins the treatment the better the long-term outcome will be. Good luck with it all, keep in touch and let us know how you are getting on. DD

stickywicket

I checked out the percentage risk of inherited RA and it is only 1%-3% (which is good news for my grandson and for your four children ). Even though you didn’t like your rheumatologist’s manner, he does seem to be being thorough in arranging the CT scan.

I don’t know much about the tests so can’t help there but, as was said earlier, just because your bloods are sero-neg doesn’t mean to say you don’t have a form of arthritis.

As for the ibuprofen lessening the pain but it still being there, that’s all I think it’s reasonable to expect from pain relief with arthritis and is why many of us on here refer to paindullers rather than painkillers. It’s a matter of achieving a balance so that one isn’t KOd by the pills and can still function despite the pain.

Princessdwarbie

Hi again

Thanks for googling the risk % stickywicket so he wasn't joking when he said it was a very very slight risk :0

Can I ask another question (sorry to be a pain) but do you and/or others you speak to on the forum get rediculus abouts of fatigue?

I've had a very strange pattern this week with Tue, Thur & today napping for 1.5 to 2hrs at teatime (This morning I didn't even wake up until 10.40am even though I went to bed at 11.30 last night) and then to nap tonight for 2hrs (especially when you have little children) I just feel so bad for them but I needed to sleep! Today I've been achy all above my shoulder blades, and around my waist - that's a new

ironic

Hi and welcome to the forum. I am sorry to say but arthritis does cause fatigue and with four children you must feel exhausted. Not easy I know but pacing yourself as much as possible helps.
ESR is an indicator to how much inflammation you have at the time of taking your blood samples. Another one will have been CRP used for the same indicator. Don’t worry too much about these at the moment things will become clearer as time goes on.
Keep a diary of your day to day aches and pains and take them with you on your next appointment. This is usually a great help to the consultant.
Some people find if the put their hands into warm water and gently flex them first thing in the morning it helps to ease them. I always wear gloves, the fingerless ones are good as they leave your finger tips free for doing things.
I have a high CCP and Rheumatoid factor in my bloods which means I have Sero-positive RA. So in some ways I was easy to diagnose.
Please keep away from the internet as I made this mistake when I was first diagnosed and frighten myself silly. The good people on the forum and the booklets from Arthritis Care are the best information you can get. There is a great helpline team if you want to ring them too.

stickywicket

Some good advice there from Ironic.

Tiredness is always a factor. I coped with two small children and arthritis. I wouldn't like to try it with four I don't know how you manage.

However, I had no option but to get up early every day. I used to take a nap when the baby did. Unfortunately, I had very active kids who soon gave up on afternoon naps :roll: You must have a good babysitter

Princessdwarbie

Hi again

I've ordered copies of my recent tests & results so I can hate them with you as I'm certain I've got some wrong :0

My children are 10, 8, 7 & 2.5 so my 3 older ones are at school and luckily my chap works evenings and is home a lot in the day so he tends to the kids when I nap

I've noticed this morning my space between my index & middle finger is slightly swollen more than the left especially when I clinch both fits it's more prominent, is this something they will most likely pick up on my ultrasound?

When I've obtained my tests & results (hopefully tomorrow/weds) I can share them with you see what you think?!

Just out of interest how old are you, male/female and how long have you been suffering?

Sarah x

barbara12

Hello princess and welcome
I have OA but have had raised levels..of something or other...sorry I can never remember the names...I do understand your worry..its good in a way to have a label, you know what you are up against.
Fatigue is a big factor in any arthritis..I can sleep well and wake up so tired..I do wish you well with everything, and I do hope you stay with us...its good to talk to people that understand some of what you are going through x

stickywicket

I'm not good on what scans pick up. I've only ever had one CT and one MRI for arthritis and that was when I broke my hip. I hope yours shows something that will be helpful. By the way, I'm female 66 and had RA for 51 years.

Princessdwarbie

Right they've finally arrived so promised here are the results (on paper, Im normal)

*HI - Above high reference limit
*U - Unspecified interval

Rheumatoid factor - NEG
CRP - 1 mg/L (*U <5)
Plasma Viscosity - *HI 1.75 mPa.s (*U 1.5 - 1.72)

Autoimmune Profile
Anti-nuclear factor - NEG
Antimitochondrial auto antibody - NEG
Anti smooth muscle auto antibody - NEG
Pareital cell auto antibody - NEG
Reticulin R1 auto titre - NEG

Urea & Electrolytes
Serum sodium - 141 (*U 133 - 146)
Serum potassium - 4.5 (*U 3.5 - 5.3)
Serum urea level - 3.1 (*U 2.5 - 7.8)
Serum creatinine - 69 (*U 45 - 84)

Full Blood Count
Haemoglobin - 133 (*U 115 - 165)
Mean corpuscular volume - 92.1 (*U 80 -100)
Platelet count - 213 (*U 140 - 400)
Total white cell count - 5.2 (*U 3.6 - 11)
Neutrophil count - 2.54 (*U 1.8 - 7.5)
Lymphocyte count - 2.07 (*U 1.0 - 4.0)
Monocyte count - 0.36 (*U 0.2 - 0.8)
Eosinophil count - 0.20 (*U 0.1 - 0.4)
Basophil count - 0.04 (*U 0.02 - 0.10)

Kidney Function
Glomerular filtration - 89 mL/min (*U 90> mL/min )

X Rays

Foot
L - No bone/joint abnormality or erosive arthropathy
R - No bone/joint abnormality or erosive arthropathy

Hand
L - No bone/joint abnormality or erosive arthropathy
R - No bone/joint abnormality or erosive arthropathy

So as you can see, on paper Im rather normal except the slight raise in plasma viscosity and slight decreased kidney function!

Im waiting for 3 more blood tests to come back CCP and two others I cant remember but Im not holding my breath, Im just worried that I'll get dismissed with 'nothing wrong with you' even though I show physical symptoms