Need your advice please? Really suffering, been trying to cope but nothing is really getting any better - is it all being caused by Behcets?

[Furst]

Can I have some advice please?

Diagnosed with BD as child 1977. V severe oral issues then, couldn't eat & nearly died of malnutrition. Throat & upper oesophagus is a wrecked moon-scape of scar tissue, my Uvula and tonsils were eaten by ulcers. Tough childhood.

Other than regular but less severe ulcers it was almost dormant then until @ 2014, when treated for prolapsed disc. Since this time huge list of Behcets related symptoms that haven't yet been assembled by doctors as part of the Behcets, possibly because until my wife saw something on TV last week I had no idea they might be?

What do you think please? -

Severe routine exhaustion, severe headaches, photophobia, eye lesions (diagnosed as ? early onset Macular Degeneration) lots of floaters, dry eyes & horrible eye pain, cloudy vision etc, itchy bleeding skin lesions -ankles (tbf since @ 1990), gut problems, adjusted bladder sensation/control, severe joint pain - shoulders, elbows, wrists, also less severe - knees (not RA), severe disabling global leg pain with loss of function & disability, gout, some gut & bowel problems

Re my legs. Last summer I slowly lost ability to walk (over about a week). Basically walking got slower by day, stride reduced until I could only shuffle. Hospitalised because of spine history but MRI mostly ok. Legs got worse though although I am now walking its become v unpredictable and I have both a walker and a wheelchair because at times I just cant walk. Spinal surgeon - "I don't know what is causing the pain, its not just a spine issue..."?

Just re-considering Behcets. When I was a child it was pretty misunderstood, so given this list I wonder if its time to push for more investigations?

Any advice or experiences will be really useful.

Thanks so much everyone.

[Saassii]

Sounds to me like you're hypersensitivity to microbial activity is up again. Are you living in a water damaged building? Any water intrusion ever?

[Furst in reply to Saassii]

Partly yes thanks

We’ve had quite a bit of low level issues there.

How does that affect behcets please?

I managed to get referred to a coe hospital. No date yet though.

Thanks 👍

[gillianTS]

Hi Furst

Lots of what you write fits with many associated symptoms of Behcet's but I guess they can also fit with many other conditions too.

I too went through hell as a teenager but was never given a diagnosis until my 50's things had started to flare up in my mid to late 40's and everything started to be looked at and Behcet's was mention...

If you have not seen a rheumatologist, neurologist and ophthalmologist I suggest this would be a good start, my rheumatologist is my main consultant and the one who has organised my referrals to other areas of medicine.

Additional to the ulcers I have joint and muscle issues but I also have a diagnosis of ehlers danlos, I also have gastric involvement and neurological in the form of migraine that the neurologist thinks might be because of my muscle tension, Itchy skin patches, itchy eyes, no uveitis,

Look at your diet, I did remove all refined carbohydrates and eat mostly a plant based diet now which has greatly improved my gastric issues though no fully and still even now undergoing investigations in this area.

Current medication Azathioprine, soluble prednisolone used as a mouthwash only and sodium valproate for the head...

If you cannot see anyone with a hospital environment then visit a good optician and discuss your eye symptoms in relation to Behcet's, many of the opticians have part of their training includes Behcet's and they can refer you too. If you are in the UK ask your GP to refer you to a Behcet's centre of excellence. I would highly recommend you use the search facility on the Behcet's page here, click on Posts and search for what you are looking for.

Hope you can get some help soon. Gillian

[Furst in reply to gillianTS]

Thanks Gillian. Really interesting

I managed to get a referral to the coe in Birmingham so I hope to get some things ironed out there!

Thanks for answering. Really helpful.

Jon

[OpsDave70]

I have a moderate to severe headache all of the time, with maybe one half-day out of ten days without a headache. Light is my number-one enemy, and reading for more than a few minutes at a time is just not possible. The BD caused the blood vessels that supply my pituitary to swell up and choke off. This situation was called an ischemic pituitary failure. I also developed a small tumor on my pituitary, which was removed in 2015. They took biopsies of the strange scar tissue found in the sella turcica cavity and concluded that there was zero doubt that Behcets was to blame. As a result, I have panhypopituitaryism. This includes cranial diabetes Insipidus, or “water diabetes”. My body no longer regulates its own fluids and electrolytes. Any time my sodium drops too low or goes too high, I get fluid pressure on my brain and I think that’s what is causing the severe pain. I also get severe panic attacks when my headaches are really bad because it feels like I have severe claustrophobia and I want to get out of my body, but can’t. I’ve even thought about drilling a hole in my head in one of these severe episodes. I may ask for a pressure equalization port to be installed to protect my brain from damage every time my sodium gets too high or low. It is extremely difficult to regulate and I can only get a blood test at my doctor. Going on for a blood test right now is too risky?

Cheers

Dave

Blue Ridge, GA

[Furst in reply to OpsDave70]

Hi Dave

I don’t know what to say to you except I’m really sorry you’re suffering and please don’t drill a hole in your head.

Can’t they put a stent in the way they do for kids with hydrocephalus?

My condition is very different from yours. I don’t have the neuro problems you do, although I have some v mild issues in comparison.

Did they say if the Pituitary Tumour was caused by Behcets? They are looking for family links here and my Dad was found to have a small tumour on his PG shortly before he died.

I wish you all the best. Do you have a therapist? You have a lot to cope with.

Regards

Furst

[OpsDave70]

Bladder problems here too btw. What kind of issues have you been having? I have cranial diabetes insipidus, and if I don’t take my meds or if I get a bad batch of my meds and get caught out somewhere away from facilities, I have wet my pants on some occasions because I put out over 13 liters per hour of urine when the CDI is mad at me. My bladder doesn’t work very well in the first place. Right now, I seem to have it under decent control, although it isn’t perfect by any sense.

[OpsDave70]

I am on Inflectra infusions once per month. Dosing starts at one unit and it goes to a max of 10. Right now, I take around 6.5. I’ve been on it for about a year, and just this past month, I noticed that my fevers disappeared for four days straight. The fevers are back now, but it was nice while it lasted! Docs attribute chronically unstable body temp to Behcets. Same vessels that quit supplying blood to my pituitary seem to have also reduced or quit supplying blood to the brain tissue that handles body temp!