In desperate need of advice

Hey there everyone,

So I'm (again) in a situation where I don't know what to do. I've been ill for four and a half years now, and they still don't know what's wrong with me. Some of you may have already read my story earlier, but I'll explain a short version. I have inflammation in my bowel, small and now since a few months it appeared in my large bowel. When they do colonscopy the biopt shows an abnormality but they don't know what it is. It's been on and off crohn's disease, but they just can't make up their minds. Well and I have loads of other symptoms, like exhaustion, muscle and joint pains, extreme muscle weakness, edema in my bowel and upper legs (weird place right?), skin lesions like some type of acne, I have too little tear production in my eyes, I feel sick/fevery all the time, headaches, mouth ulcers, well and the list goes on.

I went to see a rheumatologist (after like 10 other specialists) and he thought I had spondyloartrhritis, but thank god I don't have that. He started a story like ''the bowel isn't my area'' and the other symptoms are not clear enough for behcet's. But he said from the first moment I saw him the diagnosis is extremely hard, and my guess is he just doesn't know how to diagnose. (Because he said the bowel part didn't belong to behcet's?)

My bowel specialist says it could possibly be crohn's, so I got corticosteroids. They worked really well in the beginning, I got like all healthy and energetic. But then, when the dosis was reduced, I got sick again. So I am in remission again (sadly) and live my days lying on my couch. The dosis was brought back up again, but it doesn't help anymore. But now my doctor has a new problem: what now? She is not happy to give me prednisolon, because the diagnosis is not sure. She wants to do new research, but... I already had a 1297109273 tests.. I don't want another colonscopy, because it's gonna be the same thing all over again: ''we don't know what you have....''

Any advice? I'm just like all confused. I just want to be treated, I'm only 21 years old and my life has been on hold for more than four years now! What if I have a disease no one has yet? Do I just have to keep searching? That's like a terrible situation.... I'll be sick all the time, doctors wouldn't be giving me any medication and my life is just shitty. So do I take prednisolon , it works.. and what then? Still no diagnosis..

xx

8 Replies

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  • Pred is a sort of 'catch all' treatment so if you are feeling ill and it helps you then perhaps it is not a bad interim treatment.

    Meanwhile, as you think you may have BD, then it would make sense to see a BD specialist rather than your doc doing new research. You could ask for a referral to a centre of excellence if you are in the UK.If it is not BD they may well have other ideas about who could help you.

    If you haven't already, have a look at the Society website, they have loads of factsheets which may help you and your doc, eg you may find the guide for intestines interesting - behcets.org.uk/information-...

    Meanwhile, please try not to get too stressed and personally I wouldn't spend too much time searching, your symptoms could fit into all sorts of conditions and that could worry you even more! Perhaps you could focus on getting the symptoms treated and taking steps towards getting a diagnosis from an expert.

  • Thank you very much voor your reply, you're absolutely right. Well I am from the Netherlands so unfortunately they don't have a behcet's specialist here (that I found).

    But thanks anyway!

  • Have you seen the facebook group? You may get some advice about Specialists there facebook.com/groups/1582566...

  • Wow I feel for you I really do, that could have been my story word for word, I was diagnosed with crohns at 21 and now at 28 they are still humming and hawing over what I have! I'm off steroids as they stopped working and the side effects started to out weigh the benefits and I'm now on Colchicine which seems to be working. I was referred to the behcets centre of excellence who hasn't confirmed the diagnosis but says the main thing is to treat my symptoms not confirm a name for it. In some ways that's perfect as I don't care the name I just want my life back! Where are u based? Can u ask for a referral? Im so sorry I don't have any solid advice, hopefully knowing someone else has been thru the same thing will give u a bit of comfort! Feel free to message me if u want to ask more questions etc xxx

  • Thank you for your reply! It really helps me to know I am not alone in my story. I really don't know that medicine. What kind of doctor are you seeing? I am from the Netherlands! It would be very expensive for me to come to such an excellence center because insurance doesn't cover it.. I would like to remain having contact with you, if you would like that too! I am interested in your tests en tests results and everything you have been through... Maybe we can help eachother :-)

    thanks again xxx

  • Where are you based? If you are in England you could get a referral to a Behçet's Centre of Excellence. These are centrally funded and would not cost your GP's practice anything. The Centres are happy to work with people towards confirming or eliminating a diagnosis of Behçet's and do this through a rigorous process of fact-checking and consultation with a number of specialists experienced in the disease.

    You mention ulcers. These are key to a diagnosis of Behçet's Disease, and can sometimes be overlooked as they may seem minor when compared with the debilitating effects of intestinal disease (which can be linked to BD, by the way). I never realised their significance until I read about BD, and in fact never reported them to my GP as I thought of them as just 'part of being run down'. It wasn't until I started recording and photographing the ulcers prior to my first appointment at the CoE that I realised how bad they were: I'd had them so often I had learned to filter them out. Skin lesions are also common in BD and recording these might help ascertain whether they are BD linked.

    Have you tried eliminating gluten completely from your diet? A lot of us are very gluten intolerant, and in my case I went into a long remission very soon after going gluten-free.

    Best of luck. Do keep us posted.

    Jx

  • Thank you very much for all your advice. Unfortenately I am from Holland and they don't have an excellence center here, and going to the UK would be really expensive because insurance doesn't cover it. Yes I know, but the rheumatologist I saw didn't have much expertise in this area. So my idea at this point is really to get treatment for the symptoms that I have, and not focus as much on the diagnosis at this point. Maybe later it is an idea to see an excellence center, but at this point I just want to get help. And Crohn's and Behcet's have sort of the same treatment plan right? I have tried all sorts of diets, and gluten doesn't seem to be the problem with me. When my bowel is being stupid I know now what I can and can't eat to keep it as peacefull as possible. But thanks for the advice!!! I have a big problem with sugar when my bowel problems are really bad... I'm trying to eat as healthy as I can for my bowel!

    And indeed, at first I didn't think it was important to mention, but my doctor also says, could be a sign of auto-immune disease, but could also be just a normal symptom because 20% of the people have them.. getting really tired of being send home with such a unsatisfying answer.

    But, thanks for the advice, I see it clear now again :-)

    I'll keep you posted, getting a call at November third!

    xxxx

  • Do me a favor, do a search on ratemds.com(not sure where u live,but you can pick the country/state/province,etc) Do ask your family md immediately for a new referral to a rheumatologist, one of your choosing off that list,one that you are satisfied with their credentials and feedback fr patients. I myself am on my 3rd rheumatologist- you are in charge not them when it comes to your life. If what they are saying/doing doesn't sound right-it probably isn't. Your family md-not sure what investigating she is wanting to do? You should have at least had: CRP( C-reactive protein test), ESR(estimated sed. Rate test) both are definite markers of inflammation and perhaps autoimmune disorder going on. There are markers she can test in your blood for arthritis,lupus,etc. There's also the HLA-B51 test which is a test to see if you carry the gene associated with Behcet's-note that not everyone who is symptomatic of BD will test positive. I happened to, so it was enough to FINALLY say, ya it's BD-even though we were all pretty convinced already. That test has to go to the genetics department(here anyway). If you feel shitty-take your prednisone until they come up with a better plan. Also you should regularly take an anti-inflammatory, such as Naproxen/Aleve if you aren't taking prednisone. But please remember to check with your md/pharmacist. You should have been told to take calcium,i hope after all the prednisone you took? Folic acid and vit D are also good to add:)

    I wish u good luck!! Start with that rating site for md's and look by specialty in your area and demand a new referral!

    G;)

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