Going crazy

HI all, wanted to share my experience from yesterday. For those who's read my previous post, will know that I was recently diagnosed with behçet's disease, and my daughter of 7 years old has been really sick for over 4 years. She had an appointment yesterday at the evelina hospital. I really thought that after 4 years of investigation she was going to be diagnosed with behçet's disease. Especially since they have so much evidence now. So just a quick reminder of what they already know. I have behçet's disease. She has the HLA 51 gene, she has mouth and gentile ulcers, she has knee and ankle inflammation, has sever abdominal pain, has only diahorea stool with blood and mucus for the past 4 years. Her inflammation markers CRP is always higher than normal, 24 and above. She always gets red eyes. She suffers from terrible fatigue and nausea and recently dizziness, frequent nose bleeds. And what ever else I may have forgotten to mention. All of these symptoms they have seen for themselves. So I was really disappointed when not only will they not diagnosed her, they keep saying were getting closer and closer but when I ask them to referred her to the royal london hospital behçet's center, they told me NO, as they don't believe that? That would be the best place for her to be, they first said that one of the professor who originally diagnosed me with behçet's cannot diagnosed without they say so of a rheumatologist. And can I just add, she did diagnosed me. Also that the behçet's center was a charitable organisation and was only there for financial reasons😠😠 that they would not have the professional care to care for my child, and in either way it's the rheumatologist who leads the way in behçet's disease. I explained that I was informed at my appointment at the behçet's center to have my daughter referred to them as hey have excellent paediatric specialist who deals with behçet's in children, he went on to tell me that this cannot be the case as he believes they are only 2-3 paediatric in this country and noneof them are at the behçet's center. I was so furious as after all the evidence and all these years of doing test after test on my daughter they still refused to diagnosed her. Insted he want to wait as he now wants to do an mmri scan. They don't seem to understand the amount of stress they are putting on me, wich we all know what that dies in our illness. I'm going to go back to her GP and ask her to do the referral. Just wanted to share that with you all.

8 Replies

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  • Wow Maria... makes me sad reading this. Sounds like some power play politics going on. Sad when your daughter’s health & your sanity are at the receiving end. Though sadly I have seen some of this in my own case & I remain undiagnosed yet I have many signs of Behcet’s. I am so sick, weak & debilitated that I have no tolerance for going to more specialists & telling my story. I’m in Australia.

  • I so do understand .iknow your pain and have the same pain't and stress. Me and my eldest daughter have been diagnosed. I have 5 more children that are suffering. My two youngest get very unwell all the time .looking back now ever since they been baby.all the same as your poor little girl. My girl is 7 soon she been in hospital 3 time with fever her body flaers she so hot all time. Struggling to keep her in school she looks gray in the face and my heart is broken for them all.theres no help for them but I know I see i feel how unwell they are every day. We allway try to enjoy life when we can but it is very hard to cope with. Hope you have some help. All the best.

  • Thank you for your thought and sharing your stories. I wanted to apologise if my story was a little bit much, as I was really having a bad day. I can now see that actually there are many of us going through the same situation and that makes me truly sad to hear. We are parents first and seeing our children Wether young or older dealing with any type of illness is heart breaking and makes us powerless as there nothing we can do to make them feel better. I now understanding more how much of a rare complex disease behçet's disease is, and maybe I'm thinking there should be some kind of way of sharing awareness around withing the profession and others too. I'm still learning about this actual disease myself. There are many amazing professional out there too. I just think that there not enough awareness out there. Im wishing you all the best.

  • Hi Maria,

    I'm living in the USA Florida , in in my city there are only two people who are diagnosed with Behcet's. As far as I know the best specialist to treat and diagnose is a Reumatologist/immunologist. If you able to go directly to the Reumatologist and ask for I diagnosis, that's what I did. I gave me a top to Bottom physical and ordered a lots of blood tests.

    When I returned the second time , he revealed the behcets diagnosis That was about 5 years ago. Even though I was shocked when he told me what it and that it is very rare. I felt same relief to finally got out of the unknown. Since that we been working together my doc is a very good listener so that is helpful. I'm originally from Germany, so my English grammar is not super great 😀

    I wish you find a good Reumatologist who really cares.

    Peace

    Ingrid

  • Hi

    Ask your GP for a referral or your dentist. LONDON COE is NHS funded

    I have had a few maddening instances with rheumatologists who dont like London COE. Prof Fortune is one of my all time heros and sometimes rheumatologists try to say critical things about her because she is max facial /immunology not rheumatology!! NHS politics !

    Good luck with it all and dont give up!!

    Its best to lock your posts - scroll down and then click on community only when you do a post - you will then probably get more replies

    best wishes

    Sian

  • Hi MariaDBiddulph, sorry to read of your very frustrating visit to the hospital with your daughter. Perhaps we can raise some awareness with St Evelinas. If you would like to email us, we can put some of our Factsheets in the post to the consultant you saw, especially the Factsheet on Behcet's and children! Here if you need us. info@behcetsdisease.org.uk Good luck with the GP referral to London Cof E.

  • Hi all Just a quick update. My daughter's GP's doctor has agreed it would be best for her to be referred to the COE. Where they care for me and I received excellent care. I truly believe that this is the best way moving forward, even if they end up saying is not behçet's disease I can then put my mine at ease knowing that the COE have the right team that truly understand this complex rare disease. I want to end with saying for those who are still fighting for a diagnosis, stay strong and carry on fighting, I know how hard it can be, but the end goal will be worth it. Don't give up the fight and together we are stronger and will beat this disease one day. My thought are with you all. Will keep you all posted on my daughters journey

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