Part of my condition are everyday migraine, sinus and muscle pain headaches. some we feel in part to medications also. however no neurologist i have had dealings with to date has shown the slightest interest
after an initial general MRI test (and they have been pretty damned rude about it). yet friday, after GP referral to The London and Bart Hospital, we met with a Dr Galaher (need to double check spelling here) working in dr Taylors neurological clinic. She was not up on latest re: fibromyalgia but listened whilst examining tests to date, even bio chemist results. She listen to all the symptoms and said we need to do further tests. She also asked if i had received, the 100 question tests. which i had never heard of, which she states is a test to show how impaired your cognitives are. All this tests will be carried out at the Royal London Hospital. Paul and I came away so happy with this doctors' consultation. i will record it on the hospital review. the tests will take place during the next two months and i will be keeping a symptom and meds diary. we will have the results by september. if this works and we move on to neuropyschological(?) test (electrodes recording brain activity), and results show up degree of damage, may be of very good use for ESO reviews and appeals.
i will keep you posted. Fingers crossed they can distinguish and breakdown the differing causes of headaches and offer more tailored treatment.
so for me yesterday was truly a good day. Even my husband whom came with me was impressed as he has witnessed the ignorance of some doctors.
my care team now consist of a rheumatologist, neurologist and hopefully soon an incontinence clinic, physiotherapy and ENT for sinuses bouts? The dietary i have taken to hand myself privately and take supplements due to the numerous allergies and ibs. i also pay for bio chemist tests not available on nhs (according to my gp) but neurologist told me this is untrue( umm see how good she was). my aim is to try and reduce pharmachical meds were possible.
so here i am again, its 2.30am i had taken sleeping tabs, no worries, all positive thoughts, despite pain, after just four hours sleep. awaken alert and shaky and unable to get back to sleep, alone and in pain in a home with four loving people sleeping. i always think this illustrate the strength and true unselfish nature of us fibro's.
finally my husband knows and understands how on nights like tonight i will need to sleep when i can and i can be irritable until i take my meds and rest during the day.
anyway at least we now have our new on line family to turn to in this lonely wakeful nights. i am amazed how much each and everyone of us rarely fulfils a full nights sleep. we are not only supporting each other but learning also