[Mrs M]

Hi Guys!

just a quick note as I'm not doing right good at the moment. Just managed to get out of bed after spending 3 days there and needed to ask the following.

My rheumatoid factor test was 38 and normal range is 0 - 20 but docs say that it doesn't mean anything and that it can't help in my diagnosis?????????
Why have the test and why have a normal range if it has no relevance.

Right got to go back to bed as it's taken it out of me just to pop down stairs for 10 mins.

Any reply would be great. Hope you are all doing well and will speak soon when I've got a little strength and less pain.
:sadbye:

Mrs M x

 

[Maia]

Glad to hear you were able to get a copy of your blood test results. Is this doctor who is ignoring this test result your GP or rheumy? I seem to recall it was you GP dismissing most things but you do have a rheumy as well just have to wait to see him/her.

It does seem very odd to me too that you have a value nearly twice the limit of normal, combined with the symptoms you have, and it's all still being ignored by your GP or conveyed to you as normal. I would imagine that your rheumy will interpret these results differently and hopefully initiate treatment.

 

[Mrs M]

Thanks Maia

It's GP that said not to worry and that it's fine?? Spoke on phone several times today with GP as I'm really fed up with no treatment let alone diagnosis and last couple of days as I mentioned have not been good:worried:

He's spoke to Rheumy department at hospital and it's been said that although they've diagnosed Fibro they believe other things are happening but all my bloods are fine so they don't know what to make of me? GP also spoke to a doctor at the hospital who apparantly is very senior and he's looked over my file and suggested that I have Complexed Regional Pain Disorder!!!!!!! Which I've never heard of and nor as my GP. This doc at hospital also said that he can clearly say that I don't have SLE or Raynauds which I didn't even know was in the running.

Oh my I feel so terrible and even more confused as to what's happening.
GP said that they would like to admit me to hospital for a week so that they can run more tests and hopefully get to the bottom of things rather than waiting for another rheumy appointment and vascular clinic appointment. I've refused only because right now my daughters already upset at how poorly I am and I don't want to worry her anymore. I've always been here for her so a week a way would be just heart break. Everythings in such a state.

Mrs M x

 

[greenhaggis]

Mrs M,

I personally think that if you are offered tests accept them - your daughter is not the one that is ill with no diagnoses!

Please reconsider the admittance to hospital for more tests - may be more beneficial than months upon months of hardly any appoinments, more pain and stress on your part (and daughters, stress) and only a few tests with no outcome!

In the longrun, I'm sure your daughter would rather see that you receive care and attention rather than refuse it just because she's not coping that well with your problems!

Take care and get lots of rest tonight!

Hugs,

Lesley

 

[cath]

Hi Mrs M,

I'd just like to agree with Lesley. Take up thier offer. They won't make it twice, and a refusal may be seen as evidence that you aren't really sick, and may make it harder to be taken seriously in the future.

I'm probably asking a really dumb question here, but are they considering rheumatoid arthritis? That does seem logical given a positive RA?

You can always soften the blow to your daughter by making light of it to her - mummy is ahving a rest in the hospital sort of thing, and by going in stocked with a supply of small presents for her for each visit, so that she remembers the time as being at least partially positive.

Plus, she will benifit immeasurably by having a mum that gets better not worse:blush:

X C X

 

[greenhaggis]

Mrs M,

I can say wholehartedly how difficult the emotions are being ill and coping with the emotions of kids on top!

I have been ill due to SLE and before diagnoses I and various kids (depending on whether born or in my womb) and hubby have had to cope with numerous hospital stays and many test etc. My pregnancies were all high risk even before the SLE diagnoses - I lived in and out of hospital.

BUT we all coped (stressfull at times) and are here to tell the tale!

SLE diagnosed recently and then came even more tests and hospital visits, but we still cope and will hopefully carry on coping and stay smiling!

Take care!

Lesley

 

[Clare.T]

Hello Mrs M
It doesn't help you much I expect, unless it encourages you to turn real nasty with these docs, because I am shocked about the treatment you are getting or rather, not getting. Didn't your GP say he thought they would put you on Prednisone because all the symptoms point to some sort of vasculitis and or lupus or something very similar.
It is true that the RF isn't diagnostically significant for lupus, although it would be weighty in RA diagnosis along with other signs and symptoms, from what I gather.
I am sorry you are going through so much. I think you are seeing the rheumy again in a few weeks. Maybe your GP could contact them expressing his concerns and making sure they realise how unwell you are - and have been for months.

Many Hugs
Clare

 

[KarolH]

I agree with Green haggis and re consider the hospital stay.

The quicker you get a dx then you can get on meds and get better.

Sorry your having a tough time.:worried:

 

[Clare.T]

Sorry my post appeared before I saw about the hospital proposal. I agree with the others, about going into hospital, hard decision though it is to make but if it helps diagnosis .... The name is a more recent one for Reflex Sympathetic Dystrophy

http://www.patient.co.uk/showdoc/40001759/


Hugs again
Clare

 

[LolaLola]

Dear Mrs. M,
You have my sympathy. How old is your Daughter. My children have had to cope with me being hospitalised quite often including many miles from home.
They do cope! Please give it some thought.
xLola

 

[Mrs M]

Thankyou so very much for your support.

My daughters only 7 and we are extremely close. I was in the hospital most of my pregnancy and went through alot to get her here so I guess I have just never wanted to be apart from her.
My daughter is also really close with daddy too but I just feel that I shouldn't leave her for a week. My Hubby is more than capable of looking after his little girl but I just feel I'd be letting her down. I know that if I have to I will but I'm just so confused and drained. I do apperciate what GP is doing and he said that at any time I need I can ring and he will get me admitted for the tests. Maybe I need to get my head around things and digest it!

Will let you know about what happens.

Cath just to say that they don't think it's RA.

Hi Clare you're right GP was under impression Rheumy on last visit would put me on meds as he's thought for a while it's a vasculitis type problem but they didn't although it was a locum and not my usual Rheumy! GP was in contact with Rheumy department and although my Rheumy is on holiday for next 2 weeks he spoke to somebody else. They said that Rheumy as a last resort as put Fibro diagnosis as it's not clear with bloods what is happening but something clearly is. Also GP is trying to get me into a vascular clinic which was supposed to be done almost 3 months ago when I had to go to A & E with my right hand. GP said that if Vascular people say that things are ok they will probably go with Complexed Regional Pain Syndrome.

I really don't understand that and a little I've managed to read on internet doesn't add up with me. I don't want to offend anyone but is this an illness that docs think is in my head????? clearly can't be because of all signs that they can quite obviuosly see on my skin????????

Am going to ring GP this morning to see if they've managed a vascular clinic appointment and hopefully things will start moving on.

Once again a BIG thankyou to all I truly appreciate your support and not right sure what I would do if I didn't have your help.

Mrs M x

 

[greenhaggis]

Good luck at the GPs this morning!

I hate not being with my children too (ages 3,6,8&9), but as to letting them down I think that would come from not having tests available/offered which in turn would help me move forward to a better quality of life! A better quality of life for me also means a better quality for my kids and husband too!

I know I dont want my kids to really see that I'm ill, but they do! They also know that there are people (GP/Specalists) ,that although dont have miracle cures available can help their Mum with her illness!

When they grow up I would hate for my kids to refuse treatment etc just because they dont want to stress me out!

I'm not really explaining things to well, but I know my kids wouldnt thank me latter on in life for not trying to improve my illness now!

Hugs

Lesley

 

[Lily]

Hi Mrs. M,

I'm sorry things have got so bad for you right now :hug:

I fully understand you being hesitant to leave your daughter and husband but I think like the others that if the offer is there then you should take them up on it As was said they won't offer again and your refusal may be seen as you not taking this seriously enough or wanting help enough...........if they do take this stance they will not give you as much consideration as someone else who is committed to work with them to find a solution.

A week in hospital and the docs possibly getting to the bottom of things is far better than months or maybe years of this dragging on. The latter would be much more damaging emotionally to your family and yourself. It would also possibly be more physically damaging for you. So please give it some thought

I know it got to the point with me that my children were quite worried at seeing me so ill and no-one doing anything They were so pleased when there was hope on the horizon and I could tell them my new doc had worked it out and things would improve once the medicines took effect. You could almost see the relief and stress fade from their faces.

love
Lily

 

[Mrs M]

Thanks Guys

Got out of bed yesterday YIPPEE!!!!!!!!!!!
Still feeling awful but at least I can get up and move around a little. Started taking the pain patches prescribed as it seems it's the last resort before I may well have to give in and go into hospital:worried:

Thankyou for been there for me and will let you know what happens next. Fingers crossed I will come on this forum one day and be very posotive as I hate been negative and down all the time.

Speak soon
Mrs M xx

Take care everyone!