Hi guys, a few months ago I was admitted to hospital with neurobechets (where the bechets affects your brain and brain stem) that was sorted and I’ve been fine for a couple months, but today I’ve felt the exact same way expect the pain isn’t in my head it’s in my neck, but still feeling the same symptoms everywhere else, eye pain, joint pain, extreme tiredness and sickness. I don’t feel like eating or don’t think I have any energy to make myself food. I’ve been asleep all day. Does anyone else suffer like this and have any tips as I don’t know what to do. I have an appointment in July for the excellences bechets center but I feel myself getting bad again and don’t know if I can wait that long, open to all advice!!
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Email the centre they will pass your email on to your consultant to get back to you. I go to London and I usually get a call back with mixed success but best to get in touch with them
Hi Hun, you have already had experience of the sort of treatment you need when you have a flare so the sooner you get started on another course of treatment the better. If you already have an appointment booked for July in one of the Centres of Excellence then they will listen to your concerns that you need help now. You should not put it off until July! Please contact the centre today and explain what is happening and they will tell you what to do okay? Take care,
Hi; my son has this paracnhyml neuro behcets brainstem, please go to the doctor even though you feel better...we have been explained the same..the stiffness in the neck as you describe is not to be second guess of anything....it takes, days, weeks, months, ...to reach a full flare...I wish you well, but do not delay, they can do MRI sooner...
Hey there, also neuro here- I get the meningitis with my flares. You sound exactly like me.
What I have learned since having flares like that since 17, (im 31 now)- is really quite simple.
1. drink all the water. aim to drink 2- 2.5 liters a day. Yes. that much. huge difference right there. I bought one of those big straw reusable containers- and 250mL goes right down within seconds.
2. Get all the sleep. Usually I will sleep over 12 hours when flaring. I usually can only get up- zombie to work, come home and immediately sleep. My Bf will wake me for dinner but I usually cant eat more than a bite or two- which leads me to #3.
3. Cut all sugar. ALL OF IT. sugar, even natural, is inflammatory. I put myself in a ketogenic state when I start to flare- it gets me out quicker, or at least doesnt let me get in too bad. Aim for meat/ fish, fats, and vegetables. No not corn or potatoes. Think greens, herbs, anti inflammatory foods.
When I was in hospital recently I was presented to a group of medical students. The doctor mentioned asepticmenigitis basically meaning non-bacterial-inflammation of the meninges or membranes surrounding the brain was very typical of Behçet’s Disease. When I was originally diagnosed seven years ago I was in the middle of a huge flare which included said meningitis which I estimate took two years to get over and in that time I lost my business. Please take everyone’s advice and keep going back to your GP or if possible specialist. If you have a GP who is not very convinced that you are unwell then shop around and change GPs (if possible). Let us know how you go.
PS I was in my 40s when the symptoms started, I have been told several times if someone is diagnosed earlier there is more chance of getting the disease into remission. Lesley
ditto, a good GP is worth her weight in gold, Id been signed off work with silly diagnoses on and off for years, eventually collapsed with ulcers inside out and up and down, vasculitis so bad on my nose it looked like a bran flake and fell off, 19 days in hospital and they refused to give steroids despite gp diagnosing it as her top pick when I turned up very very ill. they thought it could be sepsis so stuck me on a pointless iv of antibiotics whilst bd romped through and wrecked me. eventually got a biopsy and they started steroids. Ive had good care and useless rubbish care, and currently have no hospital consultant and local hospital is still in special measures so Im fighting for referral to a behcets centre and gp think referral may have been bounced for being out of area, if it has been, and Im going ot check with the centre, Im going nuclear and will demand a meet with my MP. Is it me or do others have to fight to get anywhere, Im too tired to keep doing this!#
This is how I am too, a few weeks ago got bowel obstruction, was very sick with vomit, then felt better for a few days, then some ulcers despite steroids, then all joints ballooned, extreme fatigue and brain fog. Worsening bowel (gastroparesis, intusception, enteric neuropathy) issues and worse incontinence (lost control bladder and lack of pelvic floor and feeling for bowel) Then headaches started, memory loss, confusion, hearing troubles, 6 hours to watch 2 episodes of line of duty, issues with speech and word finding and writing. Feel very vacant, which isn’t me. GP put steroids up from 20-25-30 today. Again I don’t have an appt at the CofE till July the GP has contacted the consultants. I’d be lost without my wonderful GP! He really is a star! So kind and patient literally plugging all the holes in the NHS in 10 mins he has available 😊
Hey my brother in law is also suffering CNS vasculitis .He is also going through same symptoms as you mentioned a love along with sores I mouth .pls let me know what treatment are you taking to treat your illness.
So I have tried a numerous amounts of medication at the moment I’ve just started taking aziathoprine. For mouth sores and most other sores I take a course of oral steroids which really help them heal
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