new nearly-diagnosis UK

[Poetryqueen]

hi all, I’ve just recently been tentatively diagnosed by my GP, after (at least) 3 years of health issues, exhaustion and those ulcers (so so horrid). I am relieved to finally know that Behcets is a known condition, and that there is this support here. I do a lot of sport - swimming, running, surf life saving - and am interested to learn if this could be helpful or less helpful to keep up.

[Dogwind]

Hiya

Welcome to the fold.

From a non-medical perspective I would say that if you can continue with your pursuits then do, this will certainly benefit you mentally. Hopefully your Behcets allows you to continue with the physical aspect of your pastimes.

When diagnosed I as a very active sportsman, the biggest factor restricting me from my physical activities was the side effects of some of the medications.

Hopefully your Behcets get a proper diagnosis and you get prompt access to appropriate health care and medication.

[Poetryqueen in reply to Dogwind]

That’s really helpful thank you. I haven’t yet started any medication.

[Icefire]

Hi Poetryqueen,

I find activity a vital part of staying well. In addition you could look at diet. (Regardless of what diagnosis is). For me supplementing Methyfolate helps reduce ulcers. (B9 'natural' form not folic acid as some people can not metabolise it). It also reduces fatigue. I think others on here swear by b12!!

Most important, loads of green veg and a low amount of refined white carb such as flour, sugar, potato and rice. Fish, meat, eggs, cheese, fermented foods all fine. Try to avoid ultra processed foods.

Dietary changes have worked wonders in my case. Staying fit also really helps. If I take on a fitness challenge much bigger than I'm used to that will probably cause a flare.

Stress, sleep and other illness are also factors.

Good luck. Hope you feel more energetic and less in pain soon. Xx

[Poetryqueen in reply to Icefire]

Thank you. Is the methfolate on prescription or over the counter? I eat a super healthy diet anyway, not sure what I can change with that but I take on board all your comments, they are super helpful. It is amazing to connect with people like this!

[Icefire]

You can buy it over the counter. I used to buy it from biocare or cytoplan, as I deemed them to be reputable. I think you can buy direct from them or on Amazon. Most recently I went for a cheap one from Amazon and unless its placebo it seems to do the same job. Supplement companies are a bit of a minefield as they are not well regulated. I also eat well but was quite surprised at the level of blood glucose variability when wearing a continuous glucose monitor. I think these may be a bit controversial and a relatively new technology but I found it helpful. You have to do lots of reading to make sense of the numbers and not everyone is in agreement about what they should be.

Anyway take care. Let me know if you try the methyfolate and it works. X

[Ambsholb]

I feel you after years of suffering with multiple symptoms with no answer I have just been “diagnosed ” I am waiting for the clinic appointment in London. I feel so overwhelmed by it but also feel relieved that it all isn’t in my head. Stick in there we’ve got this ❤️

[Poetryqueen in reply to Ambsholb]

How did you get your London appt? Post-diagnosis by my gp I have no treatment plan, have increasing ankle pain and lack of movement. I think the psychological effect of having a diagnosis is tricky to navigate- I’ve booked in counselling sessions in case they are helpful- it’s not easy to talk to friends and colleagues about when I look well much of the time! So helpful to find people online that also have behcets.

[glad2behere]

Hi Poetry Queen, hope you are doing ok, yes, peer patient groups are often a more helpful source of info and quicker than getting to see a GP in UK. 22 years ago I was driving back from work, and nearly tailgated the car in front, My eyes had been sore, but I hadnt noticed how off my colour vision had become. Id put it down to too much time on office computer. Headaches increased, Id been to GP and she asked me to read first line on sight test chart. I couldnt see the chart anywhere! She sent me to the eye dept at hospital. Offensive registrar said "its probably just MS" and I left in tears. I noticed receptionist at her desk in rheumatology and went in in tears, she got my consultant to put his packed lunch away, and when he heard what had happened and what a behcets patient in USA had explained to me about what happened to her, he admitted me as an emergency. I had optic neuritis,, with brain inflamation. I had lost capacity to see the colour red, everything looked sepia. It had happened in exactly the same way to the patient who I was chatting with online, Id been playing chicken, shutting one eye, everthing blurred and sepia tones, shut the dodgy eye, normal colour vision. Yes Optic neuritis is a sign for MS, but not always. Ive since had a battery of tests done via the Behcets centre at Birmingham, and their examinations recently proved I have had issues with unusual cataracts, and issues with damage to retina. Following cataract surgery done very promptly after Behcets Centre got involved re eyes, my sight is much improved. Having an unusual condition means that those with less experience of it may make assumptions that symptoms are normal for another more common condition. They still can be, but its always worth asking if it might be related either to the behcets or to your meds. I wish you well in your Behcets journey.