[donna kosk]

hi
what do we have to do to get a right dx.
ok ive got a letter from salford royal from a doc i saw (2nd opion)this is what it says.

the key point was that she(me) had pain on movenent of all joints.shoulder movements were limited.she had slightly pronated feet.schober,s test was 6cm.she had 5 tender points of fibromyalgia and she was a little tender over proximal upper limbs.
her mulitiple symtoms make things difficult to assess but my own feeling is that the problems are likely to be non inflammatory.i accept that she has been ana positive and i have rechecked this today.
if her blood results today give any cause for concern,i shall range for a review at the clinic.if not then i recommendation would to refer her to pain clinicand it maybe that she would benifit from a PSYCHOLOGICAL INTERVENTION .


i can believe she wants me to see a psyco so is she sayin in all in my head????what else lock me up in a syco ward with the rockers been there done that.well its a bit long let me know what you all think

thanks take care all

donna

 

[pamela b]

Oh I am so sorry, no wonder you are confused.
I think I would ask my Gp what they thought.
I told mine I dont mind seeing a shrink so long as it is to help with coping and not to prove it is in my head ! My Gp is great and said it is just because people worry about my mood and how I am coping with such a debilitaing long term condition and not because they dont believe me.
Maybe that is what this one thinks ? Who knows isnt clear to me and why not wait for bloods before labelling you ?

Things are never as we hope are they ?
No one want a dx of Lupus , no one wants a label, what we actually want is to feel better isnt it ?
I do hope you get some answers

Hugs
Pam

 

[Merle]

Hi Donna

There isn't really enough information in the section of the letter you quote to provide you with any useful feedback on whether you are suffering from lupus or any other connective tissue disease.

A positive ANA, painful joints and tender points could be related to many conditions or none. (People without lupus can have a positive ANA - and some people diagnosed with lupus have a negative ANA). A full health history with additional clinical symptoms would be required for a diagnosis of lupus, for example.

You will find a sticky on this site which sets out the criteria that must be met for a lupus diagnosis.

I hope you get some clarity soon.

Take care.

Merle

 

[Clare.T]

Dear ((((Donna))))

Oh dear, I can certainly understand why you are so upset especially when you have already had problems in that area. But hold your horses as best you can until these latest blood tests have come through.

I doubt this diminishes your case for a further referral to Dr Bruce's department.
It strengthens your case, if anything, since you did get an SLE diagnosis from the first rheumy and who is this other one to cast doubt on that diagnosis. But you would have to be prepared to accept this third. You did have considerable evidence to support a connective tissue disease diagnosis from the blood tests and symptoms in January this year

I can tell you that sometimes the referral for psych assessment has proved its worth, because the psych has been able to confirm that symptoms are not due to psych problems. Of course it gets complicated if there are psych problems in addition but all the same the psych can help with those that might not be due to lupus. Who wouldn't be depressed going through what you are going through.
Can you make sure you have been tested for APS? That's the Lupus anticoagulant and anticardiolipins. Their presence can cause many problems including some that can be misdiagnosed as psychiatric illness like CNS lupus itself.

The other aspect worth pursuing is the medicines. If you felt any better on Prednisone it could be worth going back on it despite the side effects. As for the Plaquenil making you sick, I dont know if you were on it long enough for it to be effective but there are alternatives. It doesn't suit everybody but initial problems can often be eliminated by starting very slowly and working up to the prescribed dose and then splitting the dose, and it should always be taken with food

All the best Donna
Clare

 

[lin]

hi Donna, i can only say that clare as given great advice, all the best good luck

Lin xxxxxxxxxxx

 

[x_claire_x]

Donna.. I send you some hugs and want to tell you not to give in to it all.. you will get there, just need to keep on plodding...
Claire X

 

[donna kosk]

thanks to you all much caring people on hear but im stunned

take care all

donna

 

[x_claire_x]

Donna, I have no doubt you are stunned.. you have been through so much and still such a fight ahead... take your time to settle your thoughts and then regroup and KICK THEIR ARSES!!.... lots of hugs XXX

 

[debatat]

Hi Donna, sorry you are having such a hard time. The others have given you excellent advice. Keep going and keep fighting, you will get there. We are here to support you. Rest up so you are strong for your next doc appt.

Take care

Deb

 

[KarolH]

Hi Donna,

Once again I am so sorry that you have to deal with nonsense yet I am thinking it may not be a bad idea to see a Psychologist, this way then it can be put down on paper that in fact this is not in your head at all and moving forward no one will accuse you of that again.

I sure hope things improve for you. Sending hugs your way.:wink2::wink2::wink2:

 

[flamenco2]

Hi Donna,
Ive posted to yourself in the past, you live Wigan way is it ?
Im Salford, greater manchester.
I too am under a Consultant Rheumatologist at Salford Royal Hospital (aka - Hope Hospital). I have seen lady rheumys walking past me in that clinic, but I dont see a female, I was sent to a guy, male doctor. He is fantastic, so I cannot say more on his expertise, I am on NHS and up to now he has been thorough. I dont even know if you could ask to see another one there ? maybe its a valid possibility. I ended up paying private in 1997 to see private rheumy cos no one could get to bottom of my pain, and they even then made it sound like I was imagining it, but I WASNOT ! private rheumy diagnosed fibromyalgia, but told me to "get on with life" and dont read "books on it " LOL I got none and havent ever had medication for pain 24/7. You have to score Im certain 11-points atleast to be diagnosed fibro. unless anyone knows any different from me ............... Since at hope hospital its all come out in the wash, now have lupus with arthritis, reynauds and fibro from previous diagnosis and rheumy now said he agrees with initial diagnosis, I do have fibromyalgia too.
I hope you can perhaps see your own GP, maybe suggest can you see another rheumy at salford royal ? Dont give up at trying to get to bottom of this lot, you are not at all imagining any of it, cant believe some doctors answers to peoples problems. I am thinking of you Donna.
let me know how you get on.
love diane X

 

[Hatty]

Hi Donna

I just wanted to say that what you are going through seems to happen to so many of us (me definitely included) where you end up with some wretched doctor making you feel like you are making it up for the fun of it, when you are just trying to get a handle on your life. Believe in yourself, stand up for yourself! A psch can be very helpful, but not instead of taking your symptoms seriously. I went to a different doctor and finally realised I was being listened to. Don't let anyone tell you how you feel: you are in your shoes, and you deserve respect and support.

Good luck!

xHatty

 

[donna kosk]

hi all and thank you so much for all the replies
i went to my gp and told him how i felt and i took the letter from rheumy in hope hospital he explained everything on the letter. much to my releive the letter is good my gp told me that the rheumy does beleive me its just that i was in so much pain it was hard to check me out.the phsico doc is to help me cope with the multiple illnesses i have but still no meds.

ive got another abcess thrush and ulcers all in my mouth ouch
well just on update to all you kind people
thanks again tc


donna

 

[lazylegs]

Hi Donna,

Glad to hear your GP was able to explain everything to you. Hopefully the physio will help :hug:

Take care,
Lazylegs

 

[dixy]

hi donna

poor u has u GP not given u any meds for your ulcers:worried: Ive had them in the past and have found Nysatin really good at helping them clear up.

hugs dixy

 

[orangelily]

Hi Donna, just wanted to add that Im glad your GP explained things to you. I would mention to your GP about ulcers and try and get some medication

Good luck and sending your cyber hugs

 

[Abi]

thanks to you all much caring people on hear but im stunned

take care all

donna

Hi Donna,

The first Rheumi I saw (13 years ago) told me he "would have to call it Chronic Fatigue Syndrome" and said I would benefit from pscyhological help. I went home and cried buckets, convinced he was saying I was inventing all of this, that I was a miserable time-waster, a hyperchondriac looking for attention etc. I was absolutely flattened by it - and left with a profound mistrust of all Drs in general.

It took many years for me to realize what he was REALLY saying!

What you have to remember is that this is 'Medical Speak' - he's not saying you're crazy, he's saying you might need counselling to come to terms with what's happening to you; ie, the fact there's no clear answer/explanation for your pain, the fact you're in pain all the time and you may have to 'live' with that pain for a long time to come (ie, still find some quality of life despite the pain). In other words I think he may be recommending a Pain Management Course. (Chronic Pain can be a diagnosis in itself).

Pain Management Courses can be hugely helpful - you meet others like yourself, and others with all kinds of chronic pain conditions from people recovering from surgery, to collitis, arthritis, and so on. You learn how to 'pace' (ie, have a balance between rest and tasks) according to your own condition; how to handle other people (such as the question "What's wrong with you, then?", or how to say "No" when you need to); you find out how to get the right help you need in terms of 'aids' around the house, how to talk to your employer about making your job easier; and you also learn different coping methods for the pain itself. Everyone has input so you learn off each other - and often you come away with a new group of friends

So please don't let this badly worded letter pull you down - it's not what it might seem at first glance.

Best of luck,
(((hugs)))))
Abi
x