What the point of this site and the Vasculitis site let alone the so called doctors that are supposed to be treating me. So far have a diagnosis for U.V and going round in circles. I give up, had enough of repeated blood tests, scans and what ever. Vasculitis site say a completely different type of treatment to the B.A.D site reguarding vasculitis i.e., different drugs. Not one so called doctor at hospital seems to know much if anything about it and non seems to want to refer to someone who does. I am not a live lab rat and I object to being treat like one or some one who either has no idea about their own body or being taken for a hypochondriac. I hate feeling unwell and don't expect to be running around like a 20 year old. But I'm sick of being treated or talked to as if I'm a fool who needs to patted on the head and passed from pillar to post. I want/need answers and listened to, not talked over and sent for some unrelated test because thats what fits for them and their agenda of regurgitated learning.
Rant over but still very annoyed and fed up and the next quack that tries to push Dapsone on to me, god help them. I do not have a bacterial infection or an allergy to meds except the Tetanus injection. I wear hearing aids because hearing tests show I need them and GPs diagnosed me with Asthma and COPD. So please will some doctor pay attention to the rest of me if not they are wasting mine and their time. I have more important things to do than waste time going from one department to another.
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Boudica1
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I don’t think you will get the answers you need right now from this site or other organisations. This is a great place to off load how you feel and read others stories, which unfortunately most sound very similar to you.
I for one, am in the same boat as you . Constantly sent for irrelevant testing, which to me is dragging out the end goal of getting onto some sort of medication to give me a normal life!
I try and keep a focus that every test that comes back negative is another thing ticked off the list.
Where abouts do you live?
These diseases are so complex, it can take years to get a diagnosis, which is extremely frustrating.
Remember that any site you are visiting, has been set up by individuals that are trying to help us share our experiences and have also been through our journey (some of them)
I find the support and clarity from talking here, gives me a strong mind that this is really happening to me.
Again I can’t give you the answers, but am here to listen, share experiences and just generally help you to try and stay strong
I travelled a similar road though I had not heard of Vasculitis so maybe you have at least taken the first step. When Vasculitis was suggested to me as a possibility, I went privately to a Vasculitis specialist. I got a diagnosis and was referred back onto the nhs where I have been very well treated. Private consultants for this disease are hard to find and I don't know where you live. I went to London to Professor David D'Cruz who was really helpful and I am now at Addenbrookes with their great team.
The search can be very frustrating but I am afraid most doctors in UK don't seem to know about these rare diseases.
I was diagnosed with Takayasu Arteritis after 6 mths of referrals and a cough that would not allow me to speak, sleepless nights waking dripping with sweat, neck pain and feeling like death. You basically are a lab rat with this condition because it is so rare and very little is know about it. To make it more complicated everyone reacts differently to the medication.
I was doing great on reducing the steroids but have just had a relapse and am now on another drug and feel ill but hopefully the new drug will work.
It is frustrating - I was perfectly fit for a 60 yr old until this arose. I knew nothing about the condition. My Gp had not got a clue and basically put in my referral letter that I had a sore throat and a slight cough - when diagnosed my bloods were off the chart and my Pet scan lit up like a Xmas tree.
This site has given an insight and has actually shown me that I was really lucky in that diagnosis only took 6 mths. I am lucky to have private medical insurance with a good company but the condition is chronic and at some point they will stop financing private care.
Again I thank this site for letting me know that Addenbrook also knows about this condition on the NHS and my consultant’s ex- Registrar has a clinic at the Hammersmith.
Perhaps you could get a referral to Addenbrooke or contact the Vasculitis help line to find an ‘expert’ nearest to you.
If you’re in London, I can give you the name of my consultant.
Boudica1, I sent my reply to Lisalou19 by mistake so you can find it below.
Hi. Have you asked them what the tests are, what results are they expecting and the time frames for them? Just thinking it may help you clarify and/or justify being poked about.
Also, have you phoned the helpline to get some 1:1 support and find your nearest vasculitis specialist? The number is 0300 365 0075 and the people on the helpline are fab.
I hope you get a proper referral then to someone who knows about it and can support your overall management. 💐
Ok, I've read your 'Post', and most of the replies- Now to Business. Can you get a referral, to Dr David Jane's clinic, at Addenbrooke's Hospital Cambridge? Dr Jane, and his excellent Team, are the Absolute Best that you can get- certainly, in the UK, if not the world. Sorry but just don't, 'Piss About' with your local Hospital/Doctors, any more. I'm NOT saying that they aren't any good just, that they clearly, DON'T know what's wrong with you.
I agree that 'Things' CAN sometimes, seem to, get you Down by hey You are ALIVE! Yes, in pain, yes, deprived of Sleep, yes 'Tummy Troubles', yes Feeling like 'Sh......erm…..s.....no wait......Shouting!'
Do, by all means, try the other avenues suggested by others. All I ASK is that you, when it Hurts, you can't Focus, or even Poo- you remember that, in order for this ALL to be true, you must be ALIVE! If I said 'Chin Up' just, how hard, would you hit me? Let me see...Chin Up....
If you said chin up at the moment I may react, especially after the last appointment. Don't get me wrong he was a very young doctor and was more thorough than the others. It's just he decided to check the glands and the ones in the throat can be a bother. Hey presto it started one up causing not only pain there but in the ear as well.
On top of that I've been itching like crazy for the past few weeks from head to toe, even where there is no spot/rash.
I can put up with most things but please leave the glands alone because as a child I went through 2 years of ear infections including an abscess in one ear. Then as an adult in my 30s over a year of problems with the glands in my throat.
Now if the glands play up I know it ends up in either going to the ears or down to the lungs.
The rant was me getting to the end of my tether with how I'm feeling about everything.
I think I'm back on track now that the gland and ear have calmed down, just wish this blasted itching would do one.
I totally agree with AndewT! Get yourself referred to the right doctor. If you let us know your area, one of us may be able to suggest good specialist for UV in your area and all you have to do is ask your GP to refer you. Don't lose patience and you need all the help you can get and that starts with yourself. You must help yourself to get right help. Good luck!!! ps If you are in London, ask for Prof. Pusey at Hammersmith. He is a lovely human being and an excellent doctor.
I think it may be useful to have different names but, perhaps, along with the info/comments as to which vasculitis they specialise in and what they do NOT. There are different vasculitis conditions and it's no use of going to see a renal chap when you have got vasculitis, which has nothing to do with the renal artery.
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I am seeking help from vasculitis patients
Newly diagnosed confused! First symptoms?
Hearing loss?
Referral to a vasculitis clinic
