Worried about Arthritis Dianosis

Lozza
Lozza Member Posts: 4
edited 30. Jan 2012, 17:17 in Living with Arthritis archive
This is my first time doing anything like this but reading other peoples stories has given me the courage to write on this site! My journey started in May 2011, I was in hospital for suspected appendicitis but left the hospital diagnosed with a Muscle Groin Strain stayed off work for 2 weeks told dont lift anything and you will be fine, the pain never went hence now why I am blogging on here! I went private thank goodness I had private health, I started with a Gyne doctor, various examinations procedures including a labaroscopy a bit of endemetriosis was removed but the pain still never went!! From a Gyne Consultant I then switched to a stomach Consultant, again various examinations some extremely unpleasant, vast amount of blood test taken which all showed imflammation. MRI/CT Scans and X-Rays! all leaving the consultants baffled, then I was referred to Rheumatoid Specialist after a lot of scratching heads and not sure what is wrong by the last consultant lets see if it could be Rheumatoid Arthritis, I thought surely not I'm only 39 how could I have Arthristis! but now I have had an MRI, more bloods taken then ever and finally yesterday a Isotope Scan I am now fearing the worst! I have read and re read so many stories about people living with arthritis and I can relate to so many symptoms and feelings that I am now terrified when I go back on Monday they are going to tell me I have RA in my hip! I think they may have finally got the diagnosis right, I even have the buzzing in my hip which I have read other people have had! This week I have been at work 1 day because the pain has been so severe I have not be able to walk for long, I am in constant pain and no painkillers remove the pain and as I have not been officially diaganosed yet they have not prescribed me with any medication so I am suffering! I am exhausted alot, if I do too much which can sometimes be just a bit of housework I am done, I have no energy left! But the pain is the worst I constantly have a hot water bottle either on my hip or on top of my leg to make the pain a little easier to deal with! Today I have been in tears I am really scared about my future, I have a wonderful husband and a 9 year old son but I hate that I am so poorly alot of the time, does this get better with medication? I joke with my husband about wheelchairs and mobility scooters but behind the joking I worry there is some truth to it!! I know I need to pull myself together there could be worse things I could be diagnosed with but RA is still major and will affect my life in a major way! if any of you lovely people have any wonderful words of wisdom for me I would love to hear from you! I need a pick me up right now!! lol Thank you for reading this!

xx

Comments

  • Poppyg1rl
    Poppyg1rl Member Posts: 1,245
    edited 30. Nov -1, 00:00
    Hi Lozza,
    Lovely to meet you, the people on this forum are a friendly and supportive bunch, and if we can help you we will :D even if all we can do is sympathise and support you are never alone with a problem here.
    The earlier any form of inflammatory arthritis is caught the better, rheumatologists have an array of medications some old some new to help combat this disease. Whatever form of treatment you start on you are very closely monitored by blood tests and appts etc, now ofcourse everybody reacts differently to meds as obviously we are all different, but there are sucess stories where people manage to get their symptoms under control. You don't tend to read as much of the sucess stories as people who are really benefiting from an improved situation don't post as much as they no longer need our support, but they are out there I can assure you :D
    Don't worry yourself by googling your symptoms or medications as it causes unecessesary worry, your rheumatologist should be able to answer any questions you have and should you need to pick our brains we are always here for you.
    Lastly, don't look to far ahead, no one knows what the future holds, advances in medicine mean that there is so much the physicians can do to help us, nothing is inevitable. I use a wheelchair and a mobility scooter and I am 38, age has little or nothing to do with arthritis, nor is my life dreadful now that I am disabled, I manage to still be me, I just come at things from a different angle. Thinking of you through this tough time, you will come through it, and if ever you need some help, advice or a shoulder to lean on we are here, pm me if you ever want a more in depth chat.
    Sending you some hugs (((()))) and hope to see you posting on the forum again soon. Xxx
    'grá agus solas'
    'Love and Light' translated from Irish. X
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hi Lozza
    And a very warm welcome from me
    You will gets lots of help and loads of information on this forum
    there is is such a fine line getting the right meds, but when you do they are a great help,
    Like Poppy says googling your symptoms can be much scarier than the real thing, so any questions just ask away and someone will come along with an answer
    You take care xx
    Love
    Barbara
  • lindalegs
    lindalegs Member Posts: 5,393
    edited 30. Nov -1, 00:00
    Hi Lozza and welcome to posting and taking the first step.

    I'm so sorry you're in this predicament at the moment and you're bound to be frightened of the diagnosis on Monday.

    There is one major symptom you're missing for RA and that's the fact that it's a symmetrical disease and you only talk about one being affected. If you had RA I'm almost sure both you're hips would be bothering you.

    I'm not saying that you don't have some form of arthritis but it's more likely to be OA (Osteoarthritis). Sorry, that won't put your mind at rest as this is also a very painful disease :oops:

    I would like to reassure you that life doesn't end with arthritis and lovely things still happen your life just won't be as you once expected it to be.

    I've had RA for 26 years, since I was 27 and have two sons and I'm still in the same marriage. When I was first diagnosed one son was only 2 and the other newborn. They are both fine men now with an awareness for disabled people that the young don't always have and my husband is the most wonderful man that ever lived.

    Hope this helps and please let us know what you're diagnosis is on Monday.

    Luv,
    Love, Legs x
    'Make a life out of what you have, not what you're missing'
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Lozza, it's lovely to meet you although I am sorry you have had to find us. You have already learned an important lesson - arthritis is not age-related, it never has been and never will be but those who don't have it always assume otherwise. I began mine aged 38, was roughly diagnosed at 43 and officially diagnosed with psoriatic arthritis at 47. Now I am nearly 53 and yes, life is not at all how I thought it would be but it cannot be changed, it is as it is.

    On the plus side for you (and yes, there is one) you seem to be well on the way in getting an official diagnosis and this can only be a good thing. I am a firm believer in that the sooner the meds are started the better the prospect of an easier 'journey' through the disease. RA is a form of arthritis caused by an over-active immune system - do you have a history of things such as eczema, asthma, hayfever, or does anyone else in your family? This could explain where this has 'sprung' from, there are some ladies on here who began their RA after pregnancy and for others it just comes from nowhere.

    There are medications available which should have some form of impact in bringing this under control but as Poppy so rightly said, we are all different in how we react to the meds and what works for one may not work for another. Finding the right medication can take some time, and it can be difficult with coping with initial side effects but they are NOT guaranteed to crop up. As for the gadgets and gismos well, they make life easier and that is what has to be remembered. You may well find using a stick helpful - hold it on the opposite side to the affected hip and make sure that your stick-holding hand is level or just above your hip. A stick can take quite a bit of strain off the affected joint, thus easing the pressure on other joints on that side.

    I can understand that this is a shock for you, so please give yourself time to get used to matters, thoughts wil be whirling and will whirl for some time, talk to us, resist googling too much, be kind to yourself - don't berate yourself in any way, this is not your fault - yes, life may well change but all of us on here know what that is like, we've all been there and we can offer help and support. I will find an old thread called Acceptance and bump it up for you - it's good and interesting reading. I'll be back later, take care. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    Dear Lozza

    Don't panic. You are thinking way, way ahead of yourself. Slow down. :) Mind you, you have really been through it,I appreciate that. Thank goodness you had private insurance. I don't think you would be anywhere near as this far ahead with getting a dignosis if you had not. So that is a positive in an "odd" kinda way. I am always looking for positives. The best way to be - one can usually find at least one. Getting angry/cross about it is a waste of energy - I find laughter one of the greatest tonics and my husband is great for making me really laugh. Wish we could bottle up endorphins and carry them around and unscrew the top when we really need them. :lol:

    My arthritis (osteo arthritis), looking back, started in my late thirties, early forties. I am 61 now and love life. It has not impacted too much on my life at all and made me much more sympathetic to others with problems - I will not let it rule me. :lol:

    You have said you have a wonderful husband and a nine year old son. You are blessed. Your son is at the age where he can do things for himself and can even help you a little, which will probably make him feel important!

    There is lots of help out there with meds, ops, physio, steroid injections. You have found a whole new circle of friends on here who will offer as much help, support and sympathy as they can. Never think that a question is too "stupid" to ask.

    Chin up and I hope you have a good weekend.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • Lozza
    Lozza Member Posts: 4
    edited 30. Nov -1, 00:00
    Wow thank you all for such a warm and friendly welcome, I never expected such a response! You have all said such comforting words and I already feel that I have such support to get me through this already! You are all amazing thank you!

    I know I am still to be told officially and I guess there is still a chance I may be wrong, but having made contact on here already has given me some hope of how to live with it and how i can be inspired by such inspirational stories of courage!

    I will let you all know on Monday the outcome I'm hoping Monday will be the end of all hospitals, scans blood tests etc so in some respect I'm looking forward to a diagnosis whatever it is!

    Thank you all again I will be in touch!

    Xx
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi Lozza, Welcome to the forum, and if you are diagnosis does show you do have RA then don't think your life is over, you just have to work around to suit you! And also being on here you will have people who know what you are going through and are here with support. Also the helpline is amazing and there is someone on the line to talk to you and advise you with whatever you have questions or just need to talk they are there whenever you need them. So don't feel lost if you do find out it is RA. Let us know how you get on please we would like to know.
  • hileena111
    hileena111 Member Posts: 7,099
    edited 30. Nov -1, 00:00
    Hi Lozza
    Welcome to the forum.
    My arthritis {OA} started in my forties. I'm in my 60's now
    There is lots of help out there.....not to cure it but to help you cope.
    You are looking really far ahead.....its normal.
    IF it ever does get to the stage of mobility scooter or something like that.....look at it as coping mechanism.....not you giving in. Its letting you done things that you wouldnt otherwise be able to do.....
    That is only an IF it gets to that stage.......take things a day at a time.
    Easier said than done I know.
    Good Luck on Monday and let us know
    Love
    Hileena
  • dachshund
    dachshund Member Posts: 8,899
    edited 30. Nov -1, 00:00
    Hi Lozza.
    welcome to the forum i'm sorry you had to find us.
    i have oa i use a mobility scoota to take me where i wont to go
    and i take my dog for a walk with it oa changed my life but there are a lot of worse things i could hae had.
    you take care i know you will have any help you need from the lovely friendly people on here.
    joan xx
    take care
    joan xx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    hi lozza we will hop in your pocket monday just incase you need us so try not to worry take some one with you if you can helps as you will not remember what you have been told i know having ra is not what any one would wish but at least you will have a name to give it and you can see what best for you . the meds will take a while to kick in so they might offer you a steroind injection to keep you going you will need to listen to your body rest when you need to but with the right meds it can go into remision so stay strong good luck val
    val
  • tonesp
    tonesp Member Posts: 844
    edited 30. Nov -1, 00:00
    I think it is possibly osteoarthritis if it is in your hip.I suffered for a year or two until it was diagnosed If you read any of my posts you will realise just how good modern hip replacements are I could not walk from the lounge to the bathroom without being in agony
    Two hours or so in surgery and Hey Presto I am a new man.I can walk as far as I want All the horrible night pains and spasms have gone I can tie my own shoes and cut my own toenails I was 70 when I had my op in a Spanish hospital You don't even have a general anaesthetic
    So let hope spring eternal 8) 8) 8) 8)
  • Colin1
    Colin1 Member Posts: 1,769
    edited 30. Nov -1, 00:00
    Hello Lozza and Welcome to the forum, Yes i can see why people like us can scare you but there are plenty of fixes yes as you know there is no cure but hey you say your 39 kids can get this have a look at the young peoples forum that is so scary. I always feel sorry for young families like yours because it must be so difficult looking after them when your in so much pain. Regardless of the outcome ( by the way when do you go for your resuls ) there is little you can do i have just got to accept thats all you can do. I'm 65 next moth had RA and PA since i was 41 been in some dark places with it but hey i'm still here and still enjoying life. Not the life i would have chosen for myself but het i have a great family around me. I used to crack jokes about the wheelcair and the scooter. i have three scooters and 2 wheel chairs but i had a new drug some time ago and i'm back waliking round again. and the pain is nothing like it used to be. There is so much new meds coming out now and they are much improved on the old stuff. I would try not to wotrry so much i know you hurt phisicaly and mentaly but see what the diagnosis is. One thing i can tell you. If you are diagnose with RA there is a pain injection you can get its called a "depot medrone" injection full of steriods it takes away the pain for weeks. while they sort out your meds. I'm so sorry i cant help you i just wish i had a magic wand for you. Try to keep your chin up and please keep in contact with us and updated. Great gang of people in here so supportive weather its just a moan or a chat.
    Colin
    WHEN GOD GIVES YOU LEMONS MAKE LEMONADE
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello Lozza, how are you tonight? I hope you are as well as you can be and, no matter what Monday brings, rest assured we will be here to listen and support. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi and welcome,

    The others have already given you some great advice,
    Just wanted to wish you all the best for monday, what ever the outcome, there should be a way to try and ease your symptoms..It can take time to find what works best, but we will be here to support you on your way..
    th_tn_TisFORTIGGER.jpgxxTracyxx
  • pixie01
    pixie01 Member Posts: 52
    edited 30. Nov -1, 00:00
    I just wanted to say hello (waves)
    Good luck for tomorrow and I hope you get some answers.
    love Jo
  • resusjan
    resusjan Member Posts: 290
    edited 30. Nov -1, 00:00
    Hi Lozza,

    Just wanted to say Hi and good luck for tomorrow. Try not to worry too much - at least you will know what you are dealing with tomorrow.

    I am 42 and have RA, diagnosed in the second half of last year - the rheumatologist and other staff have been excellent, I was started on a combination of medications - Methotrexate, Sulfasalazine, Planequil etc. etc. and, so far, my joints havent worsened - I am managing to hold down a full time, physically demanding job, walk the dogs and look after my two horses. I appreciate that I may not be able to carry on doing all of this for a huge number of years but will worry about that when it happens.

    I have a son too, he is really helpful, but I found it helped to discuss things with him and let him look through the leaflets the rheumatolgist gave me so he could understand when I was having an off day.

    Good luck, keep us up to date with news

    Jan xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Good luck for tomorrow Lozza, I hope you are able to get some answers and please let us know what happens. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Lozza
    Lozza Member Posts: 4
    edited 30. Nov -1, 00:00
    Dear all, back from the consultant and a little confused, he said it wasn't arthritis but Sacroilities, also wrote down Seronegative Spondyloarthroathies and told me to goggle which explains its joint disease, but my bloods show inflammation and something wrong with my liver so I need to have an ultasound on my liver and further bloods taken! Until the consultant sees the results of those tests he cannot treat me as the drug he wants to use (an injection into my joint) will make my liver worse!

    I feel upset that still ongoing was hoping it would all be over now, the good news is no signs of RA yet but one report he gave me read "could be due to arthritic changes" but he reckons is not arthritis and he is the expert so he must know!

    Thank you all for caring and I'll update as and when I know more!

    Xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Oh heck, I am sorry to read your post because it would appear that you are no further forward in some ways but do, please, keep in touch and check the AC website for publications on spondylitis etc. I've had a rough day and so can't say too much as I am not in the right place to offer comfort but rest assured, I am thinking of you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben