I am a 60 yr old female from ME, I have had a sleep disorder that is genetically related my paternal side with my g-mother, my dad, his 2 sisters and sadly i passed it to our son who i see going thru struggles in treatment but he is not as severe as i am. i was able to control it in my teens by taking a daily nap but around my 30’s it seemed to change overnite with sleep episodes while driving ,while standing eating etcc and this caused multiple auto accidents and falls with fractures and the impact on my marriage by not being able to go places with my husband, surprisingly we are still together, but my children beared the worse like always watching me if my head started to nod at the wheel and they would yell and shake me, and i am embarrassed to tell you that during those cold snowy ME winters my kids waited for me to pick them up as thay had to stay over for some activity, i was suppose to be there at 3pm but after work i layed downed set alarm and never woke til 6pm never hearing the phone ring and here thye were out in the cold.
But what floors me my doctors knew all that was gaing on and my 10 MSLT/PSG sleep studies that i was put thru all showed the same results sleep latency 0.5-1 min to sleep but no REM onset. the positive HLA test thye said meant nothing. i was told “BE CAREFUL DRIVING” Thye refused me stimulants for fear addiction, i had been contacting Stanford University Narcolepsy research on my untreated disease and the fears my docotrs had even though these specialist claimed and boosted how they were the only ME expert in Narcolepsy??
Well when i told the doctor that Dr Mignot from Stanford would speak with my doctors to lessen there fear and to educate them about the research and how important it is to treat the symptoms asap , he also stated that many doctors are unaware that each patient has to be treated individual to lessen the symptoms and for safety to avoid accidents and that the PDR was not appropriate as many need much higher doses and that addiction was not evident in Narcolepsy research. My doctor flatly refused as did 2 others and they were not happy with my suggestion of working with Dr Mignot, they took it as a insult so i was never followed up and a letter by one wrote derogatory remarks about my personality and that all Narcoleptics were “hard to deal with as they have psych issues” I was so angery . I was a RN and loved my career and caring for patients but i can not advocate for myself. i finally was treated when i went to live in AZ by a Indian doctor that was familar with this disease, he put me on Desoxyn up to 60 mg day and i could not believe i had a life again, but upon return to Maine i was not given this med and sent to a shrink who gave me Dexedrine 40 mg and whjile on that i got into another accident rearending a car as the doctor made me drive 1 hour away knowing my driving history. Know i am dealing with chronic pain have MGUS, urine protein 498, IgG low and Kappa/Lambda FLC and Kappa FLC high with beta fraction abnormal , i have widespread livedo vasculopathy or livedo as it was diagnosed “google search” my face also get pasty white which my family states i look like dead person walking, i am bedridden practically and also hgad a fully detached ball socket R shoulder that was missed in ME and found in Fl 1st viisit , had surgery 4 disposible rods placed in 2013 and rods still there , had mri which showed severe Chrondomalacia with raggeity bicep but my surgeon refuses surgery asked why he said your wife shoulder was detached for too long and the damage was severe and she must of been in severe pain, i also had a Catacholamine attck and was kept overnight . the opiods i am on help but ties i could use more and my pain doctor says i can do no more for you. i am on Percocet 10/325 4 day and Morphine ER 3 day. poor quality life not dependable to go places as i get to much pain and ask to leave, i do not eat much and i would rather die than live like i am as i have no joy even my children i dread to come visit as i am bed , it takes everything out of me to sit up and viisit, i am catholic so suicide is not a optiion for me, i have asked Pallaitive care but get a deer in headlite and told i am too young. in ME i had to fly back alone to FL as Govener made patients like me unable to get meds. what do u suggest. i am on ssdi medicare
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