i just want some more info about the disease

Hiya, Im Donna had BD for 10yrs, what is it you would like to no?

Hi Donna, my daughter is undergoing tests for Behcets but while her neurologist was away and she had not had any test she got very ill, she started having seizures, was admitted to hospital transferred to a neuro hospital where they decided it was not epilepsy. I tried to tell them about Behcets but they didn’t want to know. She also has walking problems falls over and has no balance. She also has the ulcers in her mouth and we think now in her stomach as she said it feels like something is scrapping in her stomach when she drinks, eating is a problem. Yesterday we were in A&E again as she came up in red lumps all over her body but nor her eyes and close around her nostrils. They put her on steroids as they thought she had a reaction to the seizure drugs, but now finally she is responding to steroids and the swelling has gone down, and she is walking at the moment, albeit wobbly. She also has the joint problems, lot of pain in them.

All I am trying is to see how others with Behcets are coping and in what capacity they have it, what kind of life she might have and tips to help cope with it all, what test will they do for her. They have put her on the phone list to admit her for tests. I really feel for all of you as I can see how she is suffering and we are not even sure if she has it yet.

Regarding your lower back, did you have an epidural during the birth? we have a Chiropractic Clinic so we deal with a lot of problems like this after births, there might be something they can do for you. I would see a Chiropractor as they deal with the nervous system and the spine where this can be coming from. If you give me a bit more in dept information I might be able to give you a bit more advice, does it radiate down your legs etc

Cheers Jane

My god, sounds like having a bad time, going by somethings i have read, i have it pretty easy my main prob is mouth ulcers and gential ulcers. Also still trying to pin down if the pain in joints are to do with it.

Just keep pushing the docs, not many are aware of it really unknown in this country, most have to look it up.
They usally just have to rule other things out before def saying it that but with the mix you say sounds more likely its that.

If they manage to get the right drugs you can lead normal life and its really just about flare ups so she may find she gets bigger gaps between flare ups.

Steriods are gd for the mouth ulcers, works for me.
Yeah had epidurial for birth and yeah sometimes goes down legs, its really worse 1st thing in morning, eases alittle after pain killers kick in then by end of day im in agony again.
Feels like the botton of spine stiffens and locks.
I also have the pain and stiffness in my wrists and fingers.
I go to physio and helps abit but scared to do too much till xray results back from rheumatology, and there dragging it out
Got pain clinic this wk so see what they suggest and may look into what you said.

Any suggests would be appreciated as now over a yr of this pain and really hard working with my daughter.