Question: Hi. Looking for some advice. My husband has been progressively going down hills for quite a few years...and we are running from Specialist to Specialist - with no answers. We have been told it could be 'psychosomatic' which is borderline insulting. I see his physical symptoms - which were there long before any diagnosis (they eventually found a DVA (no evidence at this point of any associated cavernomas or infarction) - as a result of looking into why he was having nausea, dizzyness, headaches. His balance has progressively gone down hill. He has sensory impairment - doesn't feel hot or cold or feel fibre in his finger tips. He has had gut problems for years, which they have diagnosed as GORD. He can vomit at random, with burning gut. Often, one pupil is really small, the other quite dilated or normal. He gets headaches every day, feels awful (almost like he is out of it) every day, has to lie down and sleep daily. He is not depressed as such...however is 'flat' at feeling like this and not getting anywhere. recently he totally blacked out, resulting in him falling off a platform, cracking his head and receiving a significant head injury and concussion for a week. They can't explain why. It was put on the form that he was intoxicated - which was not at all accurate. He has memory loss, gets confused, sleeps poorly etc. At the start of this journey - 2 years ago - his blood pressure was really high (190/120 on a bad day, 159/80 on a good day)...he was apparently insulin resistant. Since then, he has lost weight, manages to get to Cross Fit every morning, changed his diet - adopting the Paleo method. The whites of his eyes have gone from yellow to white, skin has cleared up a bit and he looks great physically. However, he has also recently started to urinate black worms.... GP ordered a test....pathology said it was inconclusive...despite there being black worms in the sample (which they denied seeing.) We don't know what to do. Neuro's say there is nothing there. ENT specialist said that whilst his balance is affected, it is from middle ear damage and some of it is psychosomatic. We are still trying to get someone to check him for Schistosoma or Chagas (my research of the worm is closer to Bilharzia worm than Chagas...but he did backpack in South XXXXXXX over 25 years ago.) The black worms also hatch in fresh water - ie if urine is left in the toilet bowl...the worms will hatch within half an hour.

He cannot work - as he cannot think and can barely function. Getting out of bed each day is a struggle. He gets dizzy rolling over in bed or moving too quickly. the room spins Driving - either as the driver or passenger, also makes him nauseous and dizzy...impacting vision. He consistently says there is something wrong on the right side of his head - from centre forehead to the right...it is always foggy. He feels like it's blocked (no spurs found at this point or deviated septum that could explain this). This is from a man who has worked 6 - 7 days a week for the past 20 years, loves skiing and out door activities.
Any suggestions of where we should go - what type of specialist we should be seeing - to start a proper process of elimination and thorough testing?