About 2 years ago my fit (good walker), young looking 77 year old Mum said she didn’t feel quite right!
After a couple of months thinking this feeling would go naturally she started to get double vision so she went to her doctor who referred her to the local neurologist who curtly dismissed her as suffering from stress.
Following this a whole list of symptoms she had never had before along with double vision (one eye actually sticks in place whilst the other moves normally until it then corrects itself) occurred; muscle loss, oral thrush, hair loss, scaly scalp, rash over bridge of nose/cheeks, eyes extra sensitive to light, red glows on her elbow joints, significant vein mottling on knees and backs of elbow/arms, joint stiffness particularly neck/shoulders, swelling of ankle joints, bloated stomach, but most of all chronic fatigue/weakness (which at the start was 2/3 days a week, now every time she expels energy over even the smallest of tasks it is now exhausting for her. When she feels very weak her fingers and toes tingle and finger tips turn red. She has had no significant weight loss but says to pass a motion she now almost has to instruct her bowl to work rather than natural function. She also says she generally feels worse after eating but his may be due to energy used before hand to prepare meals.
Since this all started she has had more blood tests than I can count – all negative.
She was then referred to the elderly patient specialist who to be fair sent her for brain CT scan (possible scaring but normal for age) CT scan abdomen (clear), echocardiogram and 24 hr heart monitor (thickening of heart muscle may be minor valve leak, angina but did not seem overly concerned – her doctor thought this was a red herring as blood pressure has remained pretty constantly OK.
However over these two years she has been told she may have thyroid trouble/low cortisol, fibromyalgia, polymyalgia, heart issues, lymphoma, parkinsonism, all of which do not appear to be the case (for which she has had a whole variety of pills thrust at her for short periods without positive response).
Parkinsons does run in her family and her doctor now says he wants to trial her on Parkinsons drugs but at the same time says her symptoms don’t appear to be like Parkinsons! In fact despite all the tests and symptoms he still doesn’t know what it is.
I am convinced she has an autoimmune condition like Sjorgens syndrome,lupus ,Raynards or similar which we have suggested to her doctor/specialist but they appear to go on blood test results alone which from my extensive research does not always prove a person with a negative blood test result does not have the illness.
She is currently not being treated because no one can give her a proper diagnosis and consequently she is getting very weak.
PLEASE CAN ANYONE HELP?