Me with Behcets with neuro involvement, sjrogens, ME/CFS, pancreatitis, fibromyalgia, FND, poss ms

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hi

im not gonna go on and on as I could like many or most of us!

as a child I always had suffered severe migraines with sickness, I suffered some sort of blackout for a while where I kept falling and cutting my face open and the school advised my mum to take me to the Dr but she didn't bother, they said I hadn't put my hands out when I fell which was unusual?

i was born with elhos danlos syndrome which never caused any problems at all other than slightly delayed motor skills and a bit clumsy but as an adult I started to dislocate my ankle a lot and now it just pops out all the time or sublaxes and rolls over so I just fall and it swells loads, I have 4 kids and have passed eds onto 3 of them.

my bd story started when I quit smoking ironically! I started with these massive mouth ulcers, I'm talking 50 or more, I went to the dentist who gave me steroid pellets, then the Drs who referred me to oral care. I had been feeling quite ill for a while but it had creeped up on me so gradually and I noticed that if I took paracetamol and nurofen then I could do so much more! 

The hospital insisted I had herpes but bloods were negative, the ulcers started on my privates and my joint pains were getting very severe and had put a stop to my jogging, cycling, dog walking and very much reduced my horse riding! They took biopsies of my mouth ulcers which again showed no herpes!

my migraines that I had suffered for yrs and tried injections in my head, beta blockers, acupuncture ect ect, they debilitated me! I knew something was wrong but kept getting fobbed off. In the mean time I was admitted with asceptic meningitis, another few times for tachycardia, extreme flu like symptoms being unable to move, temp of 41c, a fit, muscle spasms, then the bowel symptoms started and I was being admitted for losing too much blood from behind, severe diorreah, blocked bowel another time.

no one could answer me so I took to google and instantly Behçet's disease came up and when I read it I knew it was that!

it took two yrs of test to confirm I did I fact have Behçet's disease with neuro involvement due to severe memory issues hallucinations and loads more, since then I've been diagnosed with Crohn's disease, ulcerative colitis, chronic recurrent pancreatitis, sjrogens syndrome, fibromyalgia, ME/CFS, FND, tinnitus severly, skin problems, ulcers, rhumatoid arthritis, although I'm having tests yet again to see if any evidence of ms. Back of my eye is a,e which is also a sign apparently?

I take prednisolone but can't get off it as when I lower my dose I end up in hospital, I tried azathioprine but that stopped my bone marrow completely which is a very very rare side effect! Then tried humira but developed the pancreatitis so thought there may be a link but had it several more times since and now have a damaged pancreas and my specialist thinks it could be autoimmune pancreatitis? I'm awaiting to get well enough for infusions but can't think what they were called but will need to be admitted due to side effects as this one isn't commonly used.

just recently got out of hospital as displaying all signs of intercranial hypertension (Dr called ambulance after noticing back of my eye was cloudy indicating pressure behind eye) but 6 attempts to measure the pressure via lumbar puncture failed so will see what happens but wake with enormous migraine and have to battle to get up. I have carers to help me 5 x a wk as I'm wheelchair bound. I can walk but not far at all and fall over all the time. I have a stair lift which help as was always falling down the stairs.

im never gonna be free of all these diseases and I know there are some I've forgotton to put on here cause of my memory but you get most of it.

i like to be greedy and have it all I guess! It's not easy but there is always someone worse off than me!

i have 4 kids and passed eds to 3 of them, 2 suffer bad migraines, one severe feeding issues and tube fed, my daughter is deaf and only has one kidney and had meningo encephalitis at 4 wks old which is the type you are prone to if you have bd??? Who knows, I hope not as she get ulcers and migraines and joint pains. Time will tell.

but I live each day as best I can, I try to do as much as possible which is t much some days just turning over in bed is a huge task! I find it odd how we all are affected so differently by Behçet's disease some mildly some severe! Some sadly have lost their battle. 

Hope you are all keeping well xx