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Date: 03.10.2009
From: Michelle_s

Subject: Awaiting Diagnosis

Hi there. Have just found this forum.

I am currently waiting for my consultation at the hospital with the Rheumatologist later on in the month.

A bit about me ... I have had problems with my left wrist for about 7 years now, and have had 3 lots of surgery ... the last the nerves were severed. Although it helped, I still have joint pain (and the last MRI showed some deterioration in the joint, but I never saw a rheumatologist, just went down the surgery route.

Anyway, have been having problems with my right wrist, so went along to get a referral back to the orthopaedic consultant ... and my GP decided to do blood tests first as have had high inflamation levels in the past (which was put down to possible gladular fever).

Anyway, my ESR came back high, and some other levels were either boarderline or raised. I subsequently had a Rheumatoid Factor Screening done and showed some elevation, I cant remember the exact level.

I do get pains elsewhere at times, but not as bad as they are in my wrists (hips, neck and legs / knees) but have always put it down to the weather, sleeping awkwardly etc.

I have been taking prescribed pain relief from the GP which does help, but dont want to be having to take them as regularly as I am at the moment.

I do have trouble sleeping at times, so feel so tired and drained a lot of the time.

Gosh, I sound like a right whinger!! I just hope I get a diagnosis when I see the consultant, as have been going round in circles for years!

Michelle
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Date: 04.10.2009
From: jill

Subject: Re: Awaiting Diagnosis

A Big Welcome Michelle

your experience sounds pretty much same as many in here, takes so long to make a correct Diagnosis...then theres the waiting game, like u said, u had surgery on a wrist, makes the Docs origionally I suppose think that it isnt Arthritis(we call it Artha in here ) due to the previous surgeru u had.......my probs first began with carpal tunnel ops to both wrists, my GP thought i was nuts and didnt beleive me at first, as I just had my first baby, he was thinking of sending me to a psychaitrist, becos i just had a baby and he thought it was all in my head...... my mum rang him (she knew him as friend), told him wot for lol, and then im waiting for a nurologist appt, who spotted that i had the worst case of bliddy carpal tunnel Kings College in london had seen in years!!!

so there ya go, they sometimes get stuff wrong, from then on i suffered bad like u, but was told i had Non progressive artha, by Kings hosp....amyway ive since had 7 ops all since 2002, now need another spine op.......

what I want to say to yu Michelle is...write notes down, so u remember questions he will ask u, and take someone close with u, incase u forget what he tells u..... explain to him the amount of pain u r in, and let him know about those other joints that r now playing up.... its showing a bigger picture for him ok....tell him about your sleeepless nights due to pain waking u....they seem to listen to that! also tell them that u have or feel like u have been going round in circles for years ok...and that u have had enuff!!....one more thing, when U do get a correct diagnosis, make sure u put in a claim for DLA (disability living allowance) we R all entitled to it.... and also U r NOT a whinger, that is what this forum is for, we can larf, cry, stamp our feet, whinge lol...and we all support each other, so please come back, we need ppl to keep coming back to that this forum can remain informative....take caare now

Love JIll x
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Date: 04.10.2009
From: Michelle_s

Subject: Re: Awaiting Diagnosis

I am delighted to have found this forum.

I think because this is for many (myself included) a hidden illness ... yes, I notice swelling in my joints but others wouldnt obviously notice this ... that you do get 'non believers' around you that think you are making a mountain out of a molehill. Its nice to find like minded people that know some of what you are going through.

Another couple of things that I didnt mention in my original post, and I dont have any idea if this is connected ... is I have regular tummy disturbances, going from one extreme to the other, if you know what I mean! I know that a side effect of the co-codamol and diclonfenac can be constipation and irratation of the gut, but I wondered if IBS (or forms of) can be a symptom?

Also, I get a lot of headaches ... and probably a couple of times a month a full-blown migraine. I have been having what feels like a trapped nerve in my neck from time to time ... could the headaches also be interlinked?

Apologies for the questions ... I just want to be sort of prepared for my rheumatology appointment in 3 weeks time.

Thanks for your help ... and Jill, thanks for making me feels so welcome!

Michelle x
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Date: 04.10.2009
From: Bernie

Subject: Re: Awaiting Diagnosis

Hi Michell, welcome to the sit, I'm sure you will find it very useful. Looking at your pst it sounds a lot like myself. About a year ago, my hand started to get painful, the doc thought it as carpel tunnel, it turned out it as osteoarthritis, so painfull. Then the same happened to my feet. I was suffering frm bad headaches for abot 3 years, I was told it was a trapped nerve, had physio, painkillers but nothing worked. Then my rhaeumatologist injected the base of my head, it was sore but the pain has at last gone, I usad to go through hell with it and I'm so relieved it's gone. In may of this year, my right hip started to get painfull, then the other one, before I knew it my body was aching all over. Arms, legs, hips, back. I didn't know what was going on. Went to rummy and he said I have 'fibromyalgia',well at least I know. Anyway, to my point,ha, I think it may be woth your while looking it up on the net because,although I'm not an expert, it sounds like you have many of the symptoms. I hope I'm wrong but you never know. Good luck. I hope I wss a help.
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Date: 04.10.2009
From: val h :-)

Subject: Re: Awaiting Diagnosis

ih michelle-s u r going through it feel free to shout and scream we all do on bad days as know one else understands how hard it is to get up and move about. got my first rhummy app. on tue so got fingers crossed as things getting bad. started with stiffness in hands then swelling and pain in them and feet, hip bad and shoulder so not sleeping well and can not carrie shopping or anything lol getting fed up with all this los of control so fingers crossed these rhummys have some answers for both of us good luck lovely to have u with us.
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Date: 04.10.2009
From: jill

Subject: Re: Awaiting Diagnosis

Michelle unfortunately I have IBS too....it is linked with Artha etc....I have Proctitis(inflamation of the rectum) soz but its tru lol I hear the gals say lol.....Inflamatory bowel disease is different from Irritable Bowel syndrome, often people feet the two mixed up..... find out from ya rhummy and put that in your notes too ok..... Michellle, the gals that answered your questions and welcomed u, have been in this forum a long time now, like me, we strike up a friendship, it happesn really fast, and u feel u can talk about anything...... so come back when ya can ok....we r in most days to help others, as well as our selves, by helping others, if u kn ow wot I mean....take care ok x
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