Am losing the will to live will I ever get a final answer?

Hi im Nicky and new here found this site a few days again and would like to share my story its gonna be a long one so sorry in advance.

I have been in pain for 12 years now.. started in left arm and has spread to right leg. Over the last 2 years it has now moved on to other parts as well.

Strart as swelling and very bad pain went to AE was told nothing wrong with it!! get some rest then it went to my right leg same thing so off to AE and was told nothing wrong get some rest again

After many months trips to the doctors and AE I was sent to consultant orth in 2009 and was given an MRI scan on my left arm but nothing showed up again so I was sent to phyo by this point in time I had been going back and forward since 2002 trying to get someone to do something for me so my arm was now stuck in half bend and half straight it will not fully flex or I can not touch my sholder or my head again phyo was no good to much pain as they pocked and pulled trying to make it move again I was them told its all in my head and there was nothing really wrong with it.

Went back again to Rheumatology who by now was very puzzeled to why I was in so much pain so we decided to do bone marrow scans which is where the inject radiation into your blood stream let it flow around for 3 hours then do xrays where you hold you arm in one place for 1 hour I had 5 diffrent ones done in one day was called back a coulpe or weeks later and was told that i need xrays on my new just normaly ones to start as they has found some abnormal tissue growning in my arm and wanted to see if my leg was the same finally I was thinking to my self.

things by now where getting worse and worse pain killing aroud the clock could move my arm for love no money my family was suffering as I have young children and relied and them to do most of the things I couldnt as many other parts of my body where no under attack. I was told they now need to operate on my arm and remove the lining for biopsy which they did in March 2011 and lost the results so but back in the same arm in April 2012 and again have lost the results I have refussed anymore operations on my arm I cant go through all that pain and stress any more for nothing :-(

still waiting for them to come up with some form of reason for the pain and swelling in my body and nothing.

middle of last year(2012)I had been suffer for a few months with tummy ache went to the gp who did blood test and examation and I was told I have IBS and at which point in my blood they have found immflamation markers OMG I have only waited 10 years for this am I really going to get some answers now I wonder to my self (and of course hoping)

Back again to Rheumatology and I ask if we are any closer to knowing what is taking over my body and Im told that for the last 12 years I have either been living with rheumatoid arthritis or/and Behcets cant be sure which. I have been again this week and have been told that I will be treated for the both at two diffrent times and see which medication I respond to. i have been given Hydroxychloroquine for 6 months then i will go back again.

I have read lots now about bechets but am not sure my self if that is the problem Ive had ullsers since I was 10 up to 30 at one time and now they even go all down my throat :-(

when ever I an injection of any kind I have a reaction which leaves me with no use in both my arms for a day or two depending on what i have done

I am 33 this year still have no idea what is taking over my body I take 23 tablets a day have to live each day as it come because I never know which part of my body is going to hurt from one day to the next :-( some days I have a really good day but other I cant ever bare to think that I am alive I asked my self every day why me! I am so glad I have found this site and have been reading that I'm not the only one who is suffering in silence.

Thanks for taking teh time to read my babbling

Nicky

12 Replies

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  • Hey Nicky hun....so glad you came forward to talk. Like you I only joined the site a dew days ago and have already found an emense pool of knowledge and support. I have been diasgnosed with BD for over 10 yrs now but have had weird painful and unexplained problems all my life. (I'm 54 now). Unfortunately it is so hard for anyone here to say if they think you are BD or not as the symptoms are so vast and not everyone gets them all. I am certainly not qualified in any way to suggest you would or wouldn't have BD. I just wanted to encourage you to stick in there and try to keep your chin up even though there will be times when you want to chuck in the towel. I remember when I finally got a diagnosis I cried uncontrollably and all the pressure and self disbelief of the years leading up to the actual words 'you have Behcets' came flooding out. I really hope you find out the right diagnosis soon. Even if it is BD or not I am sure you will get some reassurance and comfort from this site...everyone is so caring and knowledgable. Take care hun.....big hugs xx

  • Hi Nicky

    Welcome to the forum I hope it is as helpful to you as it has been for me.

    12 years is a long time to be suffering without really knowing what is wrong with you. I know how this feels as I had been suffering with a whole realm of symptoms with misdiagnosis and claims of it being in my head for many years [possibly since birth or at least very young] I was not diagnosed with behcets until I was around 40 years of age.

    You will find many others here who have also had a very long road to diagnosis and will also know what that feels like.

    Things are better now in the world of behcets because more and more Doctors are becoming familiar with it and also there are now centres of excellance in England. I am not sure where you live but if you do live in England you could get a referral to your nearest one or your Rheumatologist can contact them for more advice.

    The fact the Doctors are looking into this and beginning to try and find the right treatment is good and moving in the right direction. The treatment reaction will [I summise] give them a clue as to whether it is Behcets or Rheumatoid Arthritis and so you maybe nearer than you think to a firm diagnosis.....I know how it feels to loose hope when you have to keep going, thinking you have reached the goalpost, only to find it has been moved again. let alone having to go through a painful biopsy only to find it has been lost. I have had many similar experiences with test results and it is really really frustrating.

    The main point for me was to get the doctors trying to find the right treatment rather than just giving me another medication for a particular symptom....I guess from you saying that you have 23 tablets a day that you must be on quite a few different one's for different symptoms.

    You will find as you read through some of the postings that side affects come into play frequently and it can be very difficult sometimes to ascertain what is a symptom and what is a side affect.

    If your Doctors think it important for you to have another biopsy, I would urge you to find the courage as this may provide the answer to your problems.......

    You can lean on us anytime and don't be afraid to say how you really feel as it certainly isn't babble to us.

    Keep going Nicky

    Andrea :)

  • Welcome Nicky

    Please please try and relax and not get so stressed, it really will not help you. I know it's easier said that done, believe me I have been there, as have many fellow sufferers on here but it is something you must try. None of us on here will judge you because we've been through similar trials and tribulations so never feel you cannot express your feelings are ask what may appear to be awkward questions.

    I have lost a lot of the respect I had for a GP; my normal one retired and my new one was a bumbling fool. I was in so much pain one day I phoned my GP in tears and my GP asked how long this had been happening. He knew it was years so when I answered "years" he flippantly said "well come and see me next week!" and refused to see me any sooner! I changed my GP and the new one told me "You're not a young man any more, you have to expect these aches and pains!" I must have looked shocked because he added "It's more in your mind than anything else, you've created a recurring pain syndrome, I could refer you a pain clinic?" I replied "Yes please if it will help" and he said "Well let's leave it a couple of months and see if it improves!" AAAAAAARRRRRGGGGGGHHHHHHH!!!! I've only been suffering for 25 years so what difference will a couple more months make!! I changed from him too!!

    So you can see that some GPs simply do not have the expertise necessary to help BD sufferers. Andrea made a good point when she said Doctors are learning so you have to keep pushing for a proper diagnosis and not a simple fob off! It took me approx 25 years to get my diagnosis, I started suffering when I was 24-25 and finally I found someone in the medical profession who could help.

    I've just had a bad 5-6 weeks after a period of feeling quite good. My wife and I discussed it yesterday and perhaps I did too much when I was feeling well...ho hum!

    So please try not to get too stressed or upset as it will not help. As mentioned, it's not easy but please give it a try as it will help you.

    Good luck and keep posting....vent your anger on here!!

    Dave

  • Hi Nicky

    What you are feeling is totally understandable and lots of us have felt the same ((hugs))

    I had felt for many many years that i was going mad and felt like a hypochondriac I was 58 when I was diagnosed ! On looking back through my medical history it was felt I had been suffering from this for over 40 years.

    I now have a wonderful GP and am under the care of a BD clinic and everything makes sense now. It doesn't change the years of struggling with the pain, ulcers and all the other things but having a reason for it all has made me feel at least I am not going mad!!!!

    So hang in there me lovely :)

    Sharon x

  • Hi Nicky,

    My story is very similar to Picklepop's (Sharon). Unfortunately the disease is so unusual many GPs will never come across a sufferer.

    The years of suffering in silence, and being made to feel like a hypochondriac or at least a waster of the doctor's time and mis-diagnosis is a common thread through all our stories.

    As you get to read all the posts on this site, you will not feel alone, because we are all in the same boat.

    If you need to blow your top over anything, we are all here to support you (and each other), so do not be afraid to do so.

    Welcome to the site.

    All the best wishes, Suzanne x

  • I read somewhere that a GP will need to live three lifetimes before he gets to diagnose a case of BD. I thought my GP looked a bit jaded :D

  • Hi Di!

    My GP is about the same age as my daughter, but, bless her, she is all clued up. She thinks I am interesting!!!!!!

    x

  • Thanks for all the support good to know we not alone in this battle :-) the consultant I see say I'm her medical mystery

  • please don't ever think you are wasting time on this site. I've spent years being told i'm time waster. Which i'm not. I'm in a wheelchair at the moment and have been for a long while. I hope this to change one day maybe it will maybe it wouldn't but in not eating time. The amount of times I've seen Dr a faces go blank put they day things like I see that's strange different unusual. I've lost count. Please don't give up there are people who understand and can help. it's not easy our straight forward but eventually you will hey the answers you need. You will have bad days which seem to never end but they Will keep your chin up be proud, strong and as positive as you can. surround yourself with people with a positive out look and are up best. Don't be too proud to ask for help when your feeling low it's all just part of the puzzle. your not on your own there are others out here going through what you are experiencing r right now one day when your are stronger you might be able to help another person just like you. DO NOT GIVE UP. Take care Paula x

  • Dear Nicky,

    My name is Jenna and I am suffering from behcet's disease along with another very rare autoimmune disease called Addison's. I have basically suffered from different ailements all through my teen years (during this time, I was diagnosed and then undiagnosed with Lupus six times!)-- mainly being told that there was nothing wrong with me and that I was just a depressed teenager with bad skin and over-protective parents. I basically gave up on all doctors until I was 21, when I became extremely ill and needed surgery-- after that things have never been the same-- I am 25 now and have suffered in a major flare since the surgery 4 years ago. I was finally diagnosed with bechets little over a year ago and was started on proper treatments for it. I am still not doing well and not responding to any of the treatments, so I am still kind of a medical mystery for my specialists as they cannot figure out why things won't settle down.

    Anyways, I just wanted to let you know that the only way I was diagnosed was through a genetic marker in my blood for bechet's-- called the "HLA- B51" test.

    My rheumatologist was pretty sure it was behcet's the first time I saw him (based on my symptoms, my skin, and the fact that all of my previous bloodwork was always coming back negative for every other autoimmune disease). This blood test is not a positive or negative type test, but if you are suffering from behcet's symptoms and this test comes back (and all other tests for other diseases have been negative) then it is likely to be Behcet's. I would ask your doctor about doing this test on you-- I don't really understand his/her thinking about leaving you hanging in limbo for months just to see if it could be behcets or RA.

    Rheumatoid Arthritis also has a gentic type marker, called the "RA factor"-- I think if you test negative for this, then it is unlikely to be RA.

    Another test that may suggest behcet's is the bloodtest "LDH"-- this shows inflammation and tissue damage throughout the body (especially high during bad flares)-- this is one of the only tests that ever comes back high in me, proving that there is inflammation and tissue damage. Other things could be off like your liver enzymes, low complement levels, and low immunoglobulin levels (such as IgG, IGa, etc.)-- these are parts of the immune system.

    Another thing is what you've mentioned about having a reaction to injections or i.v's. This sounds familiar to what happens in Bechet's (or at least-- it happens with me)-- anytime I get injections and i.v's, it causes my vessels in my arm to explode and tighten, then the nerves get pinched on and all I feel is total stiffness and severe, sharp, shooting pain up my arm into my shoulder. Because Behcet's is attacking the blood vessels and they are already inflammed, the added trauma to them only makes things worse. Just wondering too is you have ever noticed a lump and bruising appear at the site of any needle? This is a sign of what they called the positive "pathergy test" for behcet's, it happens because the body is in a hypersensitve state and over-reacts to any little tissue damage.

    I just cannot imagine being told that you have to try treatment for both diseases and wait and see. What they fail to realize is the fact that while you are "waiting and seeing" you are sick, in pain, and suffering day in and day out. I hope that you do get some answers soon, and start feeling a bit better. Keep hanging in there and grasping onto hope-- just don't ever give up! Things will one day improve for you, little by little. We have been given this disease for a reason, and I believe that it only makes us stronger inside and we are true fighters. Take Care Nicky :) and keep in touch with us.

    Jenna

  • Hi Nicky,

    How awful for you to have such a long journey with so few answers. I realise how lucky I am to have been diagnosed right from the start.

    I need to send a quick post as my kids that type for me (eyesight problem ) are moving out but I have found a great solution for pain. I use durogesic (fentanyl ) patches with break through morphine. It works so well with no highs or lows and I find if you decrease the pain you can look at things better and sought out your other problems better. mine we prescribed by the pain team and need an authority prescription (in Australia) each month by local dr.

    Get on top of you pain and hopefully things will seem better. I feel so so sorry for you.

    Best wishes,

    Felicity

  • Thanks for replys guy Quotes from Jenna Another thing is what you've mentioned about having a reaction to injections or i.v's. This sounds familiar to what happens in Bechet's (or at least-- it happens with me)--anytime I get injections and i.v's, it causes my vessels in my arm to explode and tighten, then the nerves get pinched on and all I feel is total stiffness and severe, sharp, shooting pain up my arm into my shoulder. Because Behcet's is attacking the blood vessels and they are already inflammed, the added trauma to them only makes things worse. Just wondering too is you have ever noticed a lump and bruising appear at the site of any needle? This is a sign of what they called the positive "pathergy test" for behcet's, it happens because the body is in a hypersensitve state and over-reacts to any little tissue damage.

    Wasn't until the last year I noticed I had this I had lots of blood test and 2 and 3 generals and every time I felt numb,pins and needles' red marks and bruise around the pin hole, stiff and won't move at all and and aches worse then tooth ache this could last for 24 48 hours after.

    Wednesday 2nd Jan 8 had my first ever steroid injection In the top of my bum and I swear to god I not been able to move since and spend the whole time in bed not able to walk or use my arms I'm aching all over arms are swollen and sore my legs can't hold my weight and are also swollen today has been the worse day all i have done is sleep untill now .

    I feel drained and far from human there's me thinking it was going to help

    We have done lots of blood tests and nothing shows unless they use the radiation in to the blood stream then it shows as inflammatory and tissue and joint damage

    Thanks Nicky

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