new to seronegative - nay help - pleeaassee!

bailey27

Hi
Thanks Linda for suggesting I redo this topic as different heading hopefully will work.
I would like to introduce myself and say hi. I am new to this forum and the same as most have just been told by my doctor I have arthritis.
I have always had back problems, probably for the last 12-13 years and have felt the urge to click my joints, mainly fingers, back shoulders and knees.
Last year I started getting terrible trouble with my back int he mornings, the bottom of my back felt like it just did not want to bend at all. I went to my GP and was told to monitor it. I went back to the doctor before xmas with errible pain in lower back and in hips, mainly on the left side. She sent me for an appointment at the local hospital who told me there was nothing wrong I insisted and she sent me for an MRI scan. I hadnt heard anything from them so thought all was ok.
The last 6 months I have been getting purple lumps, often painful on my fingers and toes. My toes particularly itchey and painful. Myfingers and toes often go numb. I went to my GP this week and he told me it was Raynauds and sent me for a blood test. On the way out I asked him about the MRI I had and he told me that 1/ I had a transitional vertebrae 2/ an extra small vertebrae and that I had signs of seronegative arthritis.
He said the problems with my toes and fingers is more than likely to be from this. He sent me for the blood test which I am waiting for the results of.
Arthritis runs in my family, my aunty has RA she is now in a wheelchair and was diagnosed at aroung 35-40years old and my great gran had Osteoarthritis.
I continue to have probems with my back and my knees also are very painful especially in the mornings and cold. I am currently waiting for an appointment for surgery on my left knee which I was old would need keyhole. I am having this in approximately 2 months time.
Basically, I am in a state of panic. When I had the MRI on my back I was expecting them to tell me that it may have been muscular and because I hadnt heard back from the hospital everything was fine. I wasnt expecting this.
I particiapte in a lot of sport, problably around 6 days a week (running and kickboxing) and pride myself on keeping fit and healthy. How can I have arthritis??
Sorry fo rthe long message, any advice would be fantastic.

P.S. I have been having other symptoms which i didnt think as related and am wondering whether I should tell the doc. I have been very run down lately, last few weeks on and off. I have also been waking up in the night with numb hands with pins and needles down both arms. I thought I had ust slept on them awkwardly.
When exercising I get this terrible pain in left should joint and a pain going from front of chect through my back, like a stabbing pain in the bones. Could this be related???
Sorry for such a long note!
thanks in advance!

frogmorton

Hi Bailey and welcome!
You sound to be suffering badly and you have all my sympathy.
You must be feeling very confused and frightened at the moment. Well you've come to the right p[lace!!!
When all this kicked off for me these guys helped me so much - I still weel-up when I remember how lovely they were.
Magenta knows quite a bit about seroneg and I am sure she will read your post and tell you her experience. I beleive it is similar that RA and may well need the same type of treatment.
You should let Dr know how ru=down you feel as this is likely to be relevant.
Take care
Toni

michelle22

Hi Baily I can help you on advise but I am sure someone will be along soon who can help you but I wanted to say welcome to the site and I hope that you find what you are looking for here

Michelle

suncatcher

Hi bailey Welcome to the site you will find they all are a very supportive lot. I was sero negative for eight months before it was dianoed I had RA. I was a mom of a six month old boy. I woke to find i had pins and needle in my hands and arms. at first i thought i had lay on them funny it wasnt everyday it came on gradually. then i could not lift my arm up i went to the doctor they did a test for RA it came back zero negative and they said it was unlikely to lead to anything and i was too young to have ra and i was sent away with nothing not even a pain killer. In the mornings i had low back pain and could not get out of bed for a bit and had to lie flat until the pain went. then i found i could not put my feet flat on the ground. I walked round on tip toe. I was slow also i could not hold a knife as my hands would not work properly i had to ask my eldest daughter to carry son down stairs make his breakfast and help me as i could only go snail pace. The trips to play group was few as i was in so much pain and walking and the fatique were bad house work was a night mare to do i got so tired. only my hubby and daughter knew. about it i wanted a doctor to tell me what was wrong evenually four doctos later from same practice and them fobbing me off as i think they thought i imagined all this a fifth doctor did a test again and believed me and the test showed i had suspected RA and i was refered to a rhoumatolagist and the doctor stared me on the medication and was apsolutly discused no one and given me any medication. I saw a rhoumatolagist after twenty six days wait who said i was now positive for RA. I was relived someone belived me and i had a name for it. My son is four now and daughter is fifteen. Its been a long road and athough there is no cure there are ways to cope with it life is a little better now than then and it hurts when i think back that no one belived me. keep on to your doctor keep a diary for evidace and keep positive. all the best im on line a lot if you want to chat im here from joanne price

bailey27

Thanks for your support so far. Every bit helps. Just knowing someone else is going throught the same as you and is so positiveit enlightening.
Thank you so much

bailey27

Just a quick check. Without a blood test how can a doctor tell you have arthritis. Is it really possible to diagnose just by an MRI scan and Raynauds?

woodbon

Hello Bailey, welcome to the site, you'll find lots of help and sympathy here. From your story, it sounds as if you've had a very hard time. I don't have RA, but, OA in my spine, hips neck, hands. Also carpel tunnel syndrome, but the experiences of pain and waiting and tests etc are sadly, common to us all.

It must feel very unfair when you've been keeping yourself fit and healthy, to find out in such a manner that you have an illness, but I'm sure being fit will be of great help to you in the comming months. Good old arthritis isn't fair, it hits the young and the old, the fit and the very unfit, it dosn't seem to matter! You will, I'm sure, still be encouraged to do some exercises, but they should be suitable for you and youir condition and not too much to tire you out. Your rheumitologist or GP may refer you to a physio, who will work out with you a suitalbe plan. Some local gym's have visiting specialist medically trained trainers that you can be refered to. Mine has one and I am waiting to see them. I had treatment from them last year and it helped me to build up my strength, but I've had a set back and need to go back again .

I'm sure someone with your problem will be able to give you some advice and information about medication etc. more relevant to you.

I know its a big shock - and that will make you feel down, so don't worry about that. Its not the end of your active life, just the next stage. I hope this is helpful, I've gone on a bit :!: .

Do tell your doctor about all your symptoms. they need to know Love Sue

magenta

Hello Bailey,
I seen both your posts earlier but having 2 small (and bonkers!) children running around me, it's hard to get a minute to myself
I was diagnosed with seroneg arthritis 9yrs ago but I'd been having problems for over 20yrs. I used to be very sporty, gymnastics, netball, badminton and swimming. I hurt my back when I was 16 and ever since then, I've had problems. I'm going to cut this short or else I'll be here all night-my story is quite long :?
I've been getting bloods checked for 20yrs as I was having alot of joint pain. They automatically check to see if you have Rhuematoid Factor (RF) present which they use an an indicator for rhuematoid arthritis. They should also check your ESR (Erythrocyte Sedimentation Rate) and CRP (C-reactive protein)-these are both indicators for inflammation. I don't have RF present in blood, therefore, I have Seronegative arthritis. My ESR (apart from one time) always comes back within the normal range as too with CRP.
I was referred to a rhuematologist (eventually) after I gave myself a very bad needle-stick injury. I'm right handed and the type of job I did then, I was using syringes all the time, made my right hand become swollen and 'claw-like'. Was told I had seronegative arthritis but I told them I was RF negative. That was the first time I had heard arthritis being used for me. Like you, I was gutted. Why me?
That was 9yrs ago and I still find this hard. My story will run and run so I will cut it short now I'm now having a terrible time but please don't let that worry you. I'm only telling you this because if you look up all my posts, you'll see that I've not had it great. If you have the time (and want to ) you can use the search engine above (in the toolbar) and put in Magenta and it will bring up all my posts regarding seronegative arthritis. The first one was in August 2008 ( I think) and was titled 'Seronegative Arthritis and hacked off!'
I'm having numbness and tingling in hands and fingers and waiting to see if I've to go for nerve tests to rule out carpel tunnel and ulnar nerve problems (because of elbows).
Currently, the meds I'm on are Omeprazole 20mg in morning
Co-dydramol 20/500mg 6 tabs a day
Etodolac 600mg once a day
Amitryptilline 25mg at night
It would take me too long to tell you everything in this post but please try and read some of my other posts-I've had 2 beautiful, healthy children since my diagnosis and I still work, although part-time but that's to do with both health and child-care reasons. I'm still seroneg but others eventually become RF positive-it just seems to be taking it's time with me If there's anything else you would like to know, please get in touch even leaving me a PM (personal message). Your bloods may come back being RF positive but whatever happens, you should be put in touch with the proper medical people including Physios and Occupational therapists and get put on some meds. Nearly forgot-they're testing my blood using a new test-Anti CCP (Anti-Cyclic Citrullinated Peptide) which is now being used, especially for people like me that are RF negative-it can detect RA better than the standard one used just now. It takes about 6-8wks for results and I haven't had this back yet. Take care and please don't worry. You'll get a lot of good feedback from this site-by the way, Welcome
Magenta xx
PS Also forgot-I also have OA on both side of jaw.

bailey27

Hi, well i just phoned the doctors surgery and asked for results of blood test. they were back and she told me they came back normal.
can the doctor be sure i have seronegative based on just a scan or would the blood test show something?
thanks again

bailey27

thanks for the advice, so does that mean something showed up on the scan then?

I have so many questions at the moment but when i was in doctors surgery i forgot them all.

bailey27

lol, will do.
thanks I am guessing then just by looking at an MRI scan they can see arthritis in there?
i didnt think it was so detailed.

thanks to all the advice on here I am starting to think a lot clearly now.

thanks again everyone

bailey27

Well, last night was the worse night I think I have ever had in mylife. No exaggerations there at all!
I went for a light jog yesterday as I was feeling quite good. I felt a sharp pain in outside of left hip towards the end of my jog but felt nothing of it. Throughout the evening the ache gradually started to heat up, still nothing major but enough for me to notice.
Well, I woke up about an hour after going to bed and my god I have never felt anything like it in my life. The buring pain I got was unbelievable. I couldnt move. My legs were feeling heavy and exacltly like the 'Restless Legs Syndrome' my doctor told me I had a few years ago. I couldnt sit up because my back felt seized and couldnt move my legs about because my back hurt. I was literally lying there in agony. I would drift off to sleep and when i woke up i wuld hope it was morning and time to get up, yet only 30 mins would pass each time.
I made an appointment with the doctor this morning and she told me it was probably a bit of bursitis in there and that not to worry and to take some anti inflammatories. I explained I had tried Nurofen. She prescribed me Diclofenac and to wait to hear from the hospital where I had my scan. I explained the other doctor i saw last week explained that I had signs of arthritis in there but i couldnt quite remember so could she clarify things for me. She said that the "MRI shows some unusual arthritis there, not the Osteo type of the Rheumatoid type old people get!" lol,
"we're not quite sure thats why he is referring you!" I couldnt believe it. So at the brink of tears I thanked her and left with my Diclofenac prescription.
I phoned the hospital and they quite literally said " ooo, it looks like you have fallen thorugh a hole here we dont have you down as allocated to anyone" so she couldnt give me any information as to when I might get seen.
So, if this is what having arthritis is like I am ot looking forward to the rest. I haven't even seen a Rheumatologist yet and I am having problems!

Anyways, now I have rranted I was wondering what o earth she could have been on about?
Doctor last week said it was seronegative and to do a blood test.
This week another doctor said a bit of bursitis and unusual arthritis but not sure what type.
I am completely baffled. Please would someone shed some light here!
Thank you so much!

magenta

Hi Bailey,
I'm sorry, I can't really help you here but I just wanted to ask if the hospital are getting you on a rhuematology list? Maybe your GP can help out and try and get things moving along a bit? Hope you're ok.
Magenta x

bailey27

Hi, I am not sure quite what my GP is doing as he is away on holidays this week.
I will probably phone and ask him when he gets back.
Thanks again

woodbon

Gosh, what a b......y awful time you're having, I'm so sorry. I have lumber spine osteo arthritis and in my cervical spine. From what you describe, it sounds as if you need to see a rheumotolgist and get things sorted. I do know that sometimes rheumatoid arthritis can take some time to show up on blood tests and I know that that my GP hasn't stopped checking mine, though I've seen a rheummy.

I think, know too that my GP had to re-refer me to the hospital as she didn't get any notes back from my frist visit and I'd had a mri scan and cortisone injections, which she know nothing about :shock: :!: So do keep on at them. Have you got a sympathetic GP who you could talk to, apart from the one you saw today? I REALLY hope that you manage to sort things out a bit and put your mind at rest. They don' call us 'patients' for nothing Love Sue

bailey27

Hi
Well just an update as to my current situation. Hopefully one day this thread will help other people new to arthritis.
Saw my GP yesterday who has now referred me to a Rheumatologist. Thought this has already been done but obviously hadn't! (hmmph)
I have since had an appointment with a spinal physio for 6 weeks time. Not sure what they can do for me, as a Personal Trainer I already now about to strengthen joints...blah blah....
I am now awaiting my Rheumy appointment which in a weird kind of way I quite excited about as I can maybe get some clear answers as to what is going on.
The doc I saw last week said there was some sign of arthritis and my GP yesterday clarified that there was signs of it in my lower back and pelvis. I pretty much guess that with the pain I have been getting in those areas.
I am also still awaiting the date for surgery on my left knee, I'm have that all cleaned up and the fat pad removed. (whatever that is - never heard of it!)

Well, basically I have told myself it is not going to rule my life and so have entred a 10k race on sunday. Hopefully my knee will hold up, if not I'll walk it! lol

I feel in good spiritis even though I am in a lot of pain most mornings but I have to keep in the front of my mind it can and will get worse so make the most of what you can do now and make the most of it.

frogmorton

Hi Bailey
This sounds like a plan!!! Hopefully the ball si rolling for you to get some answers and some help.
As for the race.....I think good on you :shock: But do take care :!:
Let us know how you get on
Toni x

colinone

bailey27 wrote:

Well, last night was the worse night I think I have ever had in mylife. No exaggerations there at all!
I went for a light jog yesterday as I was feeling quite good. I felt a sharp pain in outside of left hip towards the end of my jog but felt nothing of it. Throughout the evening the ache gradually started to heat up, still nothing major but enough for me to notice.
Well, I woke up about an hour after going to bed and my god I have never felt anything like it in my life. The buring pain I got was unbelievable. I couldnt move. My legs were feeling heavy and exacltly like the 'Restless Legs Syndrome' my doctor told me I had a few years ago. I couldnt sit up because my back felt seized and couldnt move my legs about because my back hurt. I was literally lying there in agony. I would drift off to sleep and when i woke up i wuld hope it was morning and time to get up, yet only 30 mins would pass each time.
I made an appointment with the doctor this morning and she told me it was probably a bit of bursitis in there and that not to worry and to take some anti inflammatories. I explained I had tried Nurofen. She prescribed me Diclofenac and to wait to hear from the hospital where I had my scan. I explained the other doctor i saw last week explained that I had signs of arthritis in there but i couldnt quite remember so could she clarify things for me. She said that the "MRI shows some unusual arthritis there, not the Osteo type of the Rheumatoid type old people get!" lol,

Hi Bailey first of all a warm welelcome, not much point in telling you what a good site you found and how nice the people are as you can see that for yourself now. Sorry to hear your going through it a bit and it all takes so long to get a propper diagnoses . You have had some great feedback from people who suffer the same thing, i know little about it and suffer with RA and PA so not to much of the old people hey lol. One of the worst times for me is bed it must be laying still or is it just laying down i dont know. When your tiered the next day it makes you feel worse. Well i hope you get sorted soon and please keep us all updated. I know the whole thing is a dreadful worry but try not to let it get to you. take Care and keep your chin up.
Colin

ramummy

Hi Bailey - I can't offer any advice I'm afriad as I'm VERY new to all this too having been diagnosed sero-positive RA in October but I just wanted to reach out and let you know that there are people on here who'll understand how you're feeling - I'm only 32 and I can't believe I've suddenly been struck down by this 'old persons' disease. Some days are really tough but I'm hopeful that once my treatement regime is sorted out and begins to work that maybe I can get on with my life as normal just with a few adjustments.

Please feel free to PM me and have a moan - we could all do with one sometimes.

Ju

bailey27

Well I ran the 10k today!!
Almost dropped out after having a rough evening, sat with hot water bottle strapped to my hips!
Decided to go regardless.
Absolutely loved the sense of achievement. After 2 miles my hips and knees burnt like nobodies business and was in quite a lot of pain. Hip felt weak but the atmosphere and other competitors kept me going.
Think I may suffer for it tomorow though! lol
Wouldnt change it for the world, when the doc said to keep active not sure how much he meant but I think if you dont use it you lose it and for the time being if I can manage something like this arhtritis sure as hell isnt going to stop me!!!!

So if you're new to arhtritis like me, I think if you are going to be in some pain anyway why not do somehting you enjoy, dont let it take over your life!!

lindalegs

Well done Bailey showing us all that life should be lived even if we end up paying for it for a few days.



Luv Legs

tweedie

bailey27 wrote:

Well I ran the 10k today!!
Almost dropped out after having a rough evening, sat with hot water bottle strapped to my hips!
Decided to go regardless.
Absolutely loved the sense of achievement. After 2 miles my hips and knees burnt like nobodies business and was in quite a lot of pain. Hip felt weak but the atmosphere and other competitors kept me going.
Think I may suffer for it tomorow though! lol
Wouldnt change it for the world, when the doc said to keep active not sure how much he meant but I think if you dont use it you lose it and for the time being if I can manage something like this arhtritis sure as hell isnt going to stop me!!!!

So if you're new to arhtritis like me, I think if you are going to be in some pain anyway why not do somehting you enjoy, dont let it take over your life!!

Hi Bailey,
Congratulations on the run !!!
I have been looking at your posts about sero neg-- all this really means is that you haven't got the 'markers' showing in your blood tests--- at the moment - some day you might --or not -- do not worry about a label for arthritis -- sero neg arthritis is treated in exactly the same way as R Arthritis - now you are going to see a Rhumy you are on the right path -- unfortunatly you will from time to time fall over on this path with hidden pot holes !!! arthritis is a devil -- you think that you are winning then bang - it alters-- you alter or the drugs get you -- as you will see on this forum -- your life will change , I am afraid arthritis does do that-- but we are never alone on here
All the best
Joanna
(tweedie) :P

bailey27

Ouch and ouch..... yesterday took its toll on me today.
Back and hips are on fire!!! :x

Oh well, hopefully this pain will die off soon and it would have been worth it!

Thanks again everyone for your support ir is really encouraging!

rella1965

Well done for completing the 10k. Used to run but can even get a pair of high heels on anymore never mind running.

You mentioned being excited about going to see your 1st Rheumy appointment, I remember feeling the same a couple of months ago, but I think most of us here can say that they often have a bad experience with some health professionals. :!:

It may well take a couple of months before you get a diagnosis and lots of tests, scans, xrays etc, so take a list of questions and read up a lot so you are well informed about arthritis. I still havent been clinically diagnosed at the hospital 3 months later, although my GP was quite sure I had RA. It can be a bit of a waiting game especially if by the time you see the consultant you have come out of a flare up. Good luck and let us all know what happens.

magenta

bailey27 wrote:

Ouch and ouch..... yesterday took its toll on me today.
Back and hips are on fire!!! :x

Oh well, hopefully this pain will die off soon and it would have been worth it!

Thanks again everyone for your support ir is really encouraging!

Well done
Magenta x

bailey27

Very annoyed this morning...was told by doc that I would be referred to Rheumy and he would ask for me to get seen within 2-3 weeks.
Just phones ot check up and they hadnt even sent off my referral. (That was 2 weeks ago!!!) Even then I asked how long the appointment would take and they said it could take around 6 months!!!!!!!!!! :x