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Behçet's UK
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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.

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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.

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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.

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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.

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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

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Hi I live in the USA and I’m now slowly getting diagnosed with Bechet’s ( 28 years later) 😳

I have see a neurologist already and he referred me to a rheumatologist I see her 3-8-18.

What would you suggest I do to prepare for this visit?

I have pictures of outbreaks on my phone, notes from how I feel before during after a outbreak. I have been having a constant outbreaks since November 13, 2017!😩

I read you did blood work?

What’s the top/bottom physical ?

I really appreciate any advice you can give and also what medications are you on?

Thank you!!☺️

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Hi 👋

When I said physical, the doc

Just keeped looking in my mouth, ears , palpitations of all my joints muscles, legs etc. cloth on 😊

Then he gave me a blood test order , I then went to my local lab und had many veils

Of blood drawn

As I went back after 10 days or so to my Reumatologist ,he then gave me the diagnoses of Behcet’s reading the results from the tests

He explained is very rare

He prescribed Hydroxychloroquine 200mg

Plus prednisone when needed (flarup)

Hydroxychloroquine 5 times a week

Now I only take it 3 times a week, this meds Help the joint pains and heals the connective tissues

I had a a flarup moutulcer and external vagina Januar y

Wich was brought on by enormous stress

Feeling better now

I don’t like to take meds

So I also eat healthy and exercise ( a must)

Lots of fruit berries and vegetables plus salmon and

( everything organic if possible

Good luck and take care

Keep in touch

Ingrid

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My Arnp is switching her practice over to functional medicine so few years back so she’s started me on a different lifestyle path. I’ve done many tests micronutrients, organic oat cell test (shows toxins in your system) I am in my 3rd month of a detox. (No sugar,dairy gluten) no high oxyilates foods. It’s been tough but she says after 3-4 months I’ll retest and see where I’m at if I’m not better I’ll detox for 3 more months!

She’s done a “inflammatory panel” in my blood work and I don’t show high or abnormal in any of it! Is that common with Bechet’s?

I’m hoping the rheumatologist will be aggressive in treatment as I have some vision issues (uveitis) and constant outbreaks since November.

I don’t seem to have the gential uclers ever and the mouth uclers have only been few outbreaks over the 28 years. Mine are more like a shingle type rash, neuropathy, shooting pains etc. last 2 outbreaks have been in my head (right ear, left eyebrow, left eye is light sensitive and split screen vision, red bumps sporadically in my hair)

Body aches like flu symptoms, achey stiffness. Tired

I just want to feel normal again!

Before this last outbreak I was exercising daily, weights, cardio, yoga didn’t feel overly stressed.

I have struggled with insomnia for 14 years now though due to a medical malpractice (had a hital hernia and they laid equipment on my gave me 2nd & 3rd degrees burns on a Good portion of my stomach.) so I suffer with PTSD. 😏

Thanks for sharing I appreciate it!

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Hi ingridbockes123

I'm so sorry to hear that you going through such a rough time. Believe me I know how you feel. The trouble with behcets is that it effects everyone in a different way. From what I read, it sound like ur already doing what you need to be. Keeping a diary it's important this will help you and specialist too. I recommend photos. I think it's important, keep as much as possible and I know that might sound crazy. Because how many pictures of an mouth ulcer can you have right!!. But if you have a new one take a picture. I think I have over 700 different pictures of different things that effected me. It's important for us doctors to understand that it's a frequent thing. Now that I've been diagnose I'm starting to feel that I can pick up the phone and speak with a specialist that fully understand what I'm going through. So my advice is keep fighting till you get diagnose. I know it's Tierdring and there will be day where you just can't explain it over again. But do get out of bed and fight each day as its important. It's important to be honest at ur appointment explain exactly how you feel and how it effects you. Tiredness, pain through out the day. What ever it is. I do wish you all the luck. And keep us posted.

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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

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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.

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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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I just wanted to keep you all posted to my post. My daughter had her appointment at the CoE in February and she was diagnose with behcets disease. And to have honest I didn't know how to feel. In one hand obviously I'm sad and I know it's going to be a long journey for her and for me. But in the other I felt like the weight of the world just lifted. I had to be strong for almost 5 years and fight over and over again. And there were times I couldn't fight anymore, But I took a look at my beautiful girl and got back up and try again. So my advice to anyone going through this don't give up. It might take you time to get there but if you carry on you will get there. I'm do thankfully I found the CoE, and I know that myself and my daughter are in the best place we can be. Thanks for all ur support. X

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