End of the road

Hey, no one needs to reply to this, I'm sure that people on here have been in a dark hole at some point in there journey, I'm trying to scratch my way up this huge wall in front of me, but I just haven't got the energy to fight this.

I'm at the end of the road... I seriously can't do this anymore! I have fought long & hard but all I want really is TO GIVE UP!! The pain is all too much, it's unbearable. My breathing too, I CANT control my body my body's controlling me...

The only time I feel ok is when Im asleep..

So maybe that should be a permanent thing!

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  • Dearest Laura

    I have been following your posts to see how you are getting on but haven't had the time to reply. I really really feel for you,, bless you, please don't give up or give in. You have been so strong and so let down by your health team. You will be treated very soon I'm sure and things will turn a corner for you. Each day is a new one and life will get better for you. I have and still have very low times with this disease but this website has been a lifeline for me. You are a strong person and you can get through this terrible time.

    Take care

    Johanna

  • Aww hey Johanna

    I absolutely Love your comment, thank you so much for your lovely words I've realised that I cannot give up & this diagnosis will be my victory. I will keep fighting. X

  • Always keep fighting sweerie there is a light at the end of the tunnel you just have to find it and it's not always easyto find .

  • Hey amber ♥️

    It's been a long 7 year + stretch. & to actually have my doctor agree to refer me to Birmingham Queen Elizabeth hospital, is amazing as it's been such a difficult time & long awaited & for me it's massive but to her it's finally she's out of my hair.

    This is the light at the end of the tunnel & even though it's still gunna be a very difficult journey I'm ready, & It's a nice feeling knowing someone there will understand me. It's horrible being misunderstood.

    So I'm hopeful & ready & waiting.. ♥️

  • Really good to hear you being positive hope you get the help you need xx

  • Tomorrow will be a better day

    I have to continue to tell myself this when its all getting to much for me and I want to give up. sending you a virtual hug, prays and positive vibes x

  • What medication are you on? My friend became increasingly unwell for months and months. Lots of vague (and wrong diagnoses and treatments) and then he suddenly and rapidly deteriorated. He is a very strong bodied and strong willed person but lost his will due to the severe pain, fatigue and distress and couldn't even get out of bed. He forced himself on A&E, was reluctantly admitted to hospital and given some blood tests .... and then all hell broke loose! In his case he had to have blood transfusions, dialysis and plasma exchange. The great news is that he is now so very much better! (despite being on lots of meds) and is pain free. I hope his story doesn't apply to you but have you tried just presenting yourself to A&E? Go now! Tell them the rheumatology/blood results, that you have suspected vasculitis, tell them you have seriously deteriorated, show them the rash.... and very importantly tell them have you are feeling emotionally. They have a duty of care to you. All the best xx

  • Laura,

    Pick up the phone and dial 999, tell them that you are having breathing difficulties and that you have a clot in your leg. That will tick the box for an ambulance and a trip to A &E.

    Tell A&E you have Vasculitis but have been abandoned without treatment. At the very least you should get some pain relief. You have a child, giving up isn't an option. Xx

  • Hey Ladies, just letting you know I'm ok & in hospital, I've been admitted to AEC ambulatory emergency care unit. In Cheltenham general hospital, got here at 2am

    Despite being here due to deterioration from "vasculitis" as to which no one here has heard of. & the paramedic reluctantly took me to hospital as he had no idea about vasculitis & who could help me, so ECG was priority & a heart block was more of a concern.. I'm also a high risk of a possible PE - leg pain & sharp pains in my back when I breath in, 🖤 blood clot...

    Fingers crossed tomorrow I

    Can get some answers.

    A bit anxious

    But hopefully in good hands x

  • Hi Laura,

    A PE was my concern as I knew you had a blood clot.

    I hope that you can now get the treatment you so desperately need and deserve. If they don't know how to treat you then any of the specialist Vasculitis clinic such as Birmingham, Addenbrookes or the Hammersmith are always happy to help and give advice.

    I have my fingers crossed for you, if you run into problems please give me a call on the helpline and I will do what I can.

    Best wishes

    Lynn

  • Laura,

    I'm glad you are in hospital now and hopefully the start of some real diagnostics/treatment/referrals/action- This is hopeful! Please see the light at the end of the tunnel. We are all thinking about you and pulling for you. Hang in there and it will get better.

    Hugs from across the pond.

    ~G

  • Oh thank goodness you're in hospital now! Keyes has provided you with the vasculitis helpline details. I've just been looking up my local unit (North West) as there is a specialist unit at the royal liverpool. If the hospital are being difficult and failing all else you could ask them to phone the Royal Liverpool vasculitis unit (as they have CERTAINLY heard of vasculitis). I really hope you get the care and attention you need now.

    rlbuht.nhs.uk/departments/m...

  • Sorry, I've just seen Keyes earlier email re your local units (I'm on my phone so limited view).

  • Hi Laura, hope you feel better soon. When I was first admitted in 2012 I was sent home after a week, I was re admitted 1 week later as my health had deteriorated at this point they didn't know what was wrong with me. After another week they was going to send me home and refer me for tests as an out patient but I told them I would stay and have my test done first as an inpatient as you get priority . I'm sorry I don't know about your case but you must insist you see a rheumatologist and you get correctly diagnosed with treatment. Unfortunately sometimes you have too be demanding to get the treatment you need. I have to say once I had seen my rheumatologist ( I see 2 , they share my care between 2 hospitals) I've had the best possible care and could not fault them in anyway .

  • Get Cheltenham general to contact the renal team at Birminghams QE Hospital.Professor Harpers team. They hold a Special vasculitis clinic. I don't have renal involvement but I'm seen there. I have Wegeners Granulomatosis . They saved my life. I was under Gloucester Royal but had little knowledge of Vasculitis.

    It's imperative your referred.

    Very best wishes

  • Hey Ludo

    Thank you for your message,

    I mentioned to the team about referring me too BQEH but they said it was unnecessary.. I like Gloucester Royal it's far better than Cheltenham.

    My father has emailed Prof Lorraine Harper at Birmingham hospital. If my GP or General won't refer me hopefully my dad can help persuade a journey across the pond worth while. X

  • Good luck Laura hope you get to Birmingham. Sounds like you have a great dad.

  • Big hug Laura glad you in hospital x

  • Hi everyone, thank you ever so much for all of your lovely messages:) amazing ! I've been discharged!

    No treatment for vasculitis that was pushed a side basically .

    I saw a Rheumatologist & 2 ward doctors. Who all said basically the same thing.. confused about my vasculitis/diagnosis. & heart issue. Nothing sinister but need biopsy of skin, as to which I said I have been waiting for months, Missing puzzle pieces.

    I have a 1st degree heart AV veins pultruding- Negative for a PE but no evidence to back it up as the written discharge form has ????

    Taken off blood thinners...

    I have to go to AEC tomorrow morning for blood work, & for someone to have a look at my Rash again & a 48 hour halter monitor.

    I wasn't given any real diagnosis or... 🤷🏼‍♀️ Urine dip showed PH level but no protein. My lungs apart from the nodules are ok, I think the whole thing is about my heart/inflammation/palpitations .

    My resting heart rate was 120bpm & lowered.. they said my heart is beating all over the place.

    So........ I've asked for a copy of the document sent to my GP. & will await to see what happens tomorrow.. I feel as if I've hit another wall.

  • Oh gosh Laura I'm so sorry that you haven't been given a diagnosis. I'm presuming that the rheumatologist should know his/her stuff regarding vasculitis (but more informed people may correct me!). At least you are going back tomorrow for some more tests. All I can say is that the symptoms as you have described are very similar to my friend's symptoms, who has now been diagnosed with microscopic polyangiitis, a type of vasulitis. I truly hope you get a diagnosis soon and that you have been given pain relief. All the best x

  • Hey thank you for your msg above As well as this one. I do feel as if it was a waste of time, I was in ACU acute care unit in the end, & I only had cocodamol. No other pain relief. Just to have my gastric tablets were a big huff for them! I am going tomorrow to ACE they are the doctors that helped get the ball rolling in the first place. Apparently I tested negetive for the MPO but still ANCA positive.. I don't understand. Me too, I really really want to just get somewhere, xx

  • My friend was in his local hospital for three days (being treated like a trouble maker to be honest!). They tried to discharge him as they discovered he had gallstones and said it was that. He argued with the consultants and they eventually made a diagnosis and transferred him to the Royal Liverpool where was on on the HDU. So be prepared to be 'a trouble maker'. Be polite but be persistent. Difficult I know when you feel so ill but you are entitled to know what it happening. Its so easy to slip between consultants' specialties, hospital led (not person centred) procedures and to fall foul of management led admission/discharge targets. With regards to pain, a pain management consultant once told me that no one needs to be in severe pain these days. If you need to phone A&E, phone NHS 111and ask for help.

  • I'm sorry to hear about your friend, bless its just inhumane, I was very persistent today & it fell on deaf ears. I asked what bloods were being taken & I wanted to know about what was being said about me. Obviously we're classed as numbers or letters in hospital. Mine was D4, but I just felt like I wasn't allowed to be in that bed, & they just wanted me out of there. I suppose it's normal to feel like this because again I've come away more worried. I don't think they think it's much of a concern. But I know in my heart that I'm not any better, & whatever is happening it's fluctuating. It's not always going to be on an even keel, my "vasculitis " comes in cycles.. & so I guess that's like a relapse. I don't know. I'm my own detective, & trying to convince the medical world is a battle I have lost many of times, but you can see on the exterior of my body it's bad & on the inside it's not any different. I guess if my head was rolling off I'd be taken seriously.

    The paramedic said last night that I don't look the sort just to ring 999.

    But I didn't look unwell, he said I looked ok.

    I said never judge a book by its cover. I felt offended.. but I went.. & I endured... & now I'm home. Fingers crossed tomorrow I'll find out more..

    But I won't be taking any prisoners 👩‍✈️x

  • Dearest Laura,, I'm so glad you've pushed forward and fighting to get a diagnosis and treatment. Ask for a biopsy of your lesions on your legs. They should put on the request form ? Vasculitis. This will surely give a clear answer. This is how mine was diagnosed and I thought your lesions looked similar to mine. I have small and medium vessel vasculitis but a specific one they are unable to say which as I don't fit into a tipical type. Most likely cutaneous polyarterits nodosa. We are all routing for you and here for you.

    Keep fighting you can do this

    Johanna x

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