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I continue to have INSOMNIA issues, since my first MG symptoms appeared on July 25, 2019. I was not diagnosed with MG till eight months later on March 24, 2020. I spent five months in five hospitals in 2020. Then for 2021, I had to switch to a new PCP. After a lot of begging for a referral, I finally got a phone call from INFINITY SLEEP SOLUTIONS in Tempe AZ. They scheduled me for one test in May and later they wanted me to return for a second overnight test in June.
My PCP thought that he had ordered an “in Home Test” … but both were in a test lab overnite. Neither my PCP nor INFINITY would ever give me those two test reports or even discuss the sleep study results. So I finally replaced that PCP and got a more responsible ADULT PCP, and she has much better doctor/patient skills .. so she got me a referral to a BANNER SLEEP SOLUTIONS doctor, who I specifically ask for … as the new referral is a NEUROLOGIST and also the SLEEP STUDY doctor. That way … if she is another poorly educated “neurologist ?” … then at least she knows who to ask around … to find out what MYASTHENIA GRAVIS is (unlike the three “neurologists??” at my first hospital). Also I was told about ALL STRIPES and PICNIC HEALTH RARE DISEASE FOUNDATIONS … and they have recovered for me over 1600 medical documents, including my two 2021 SLEEP LAB REPORTS, my old PCP’s referral request, and a separate report from the first hospital that talked of N1 and N2 and spindles ??
So now I am ready to have the new referral explain my original SLEEP STUDIES and schedule new ones if needed, once my slow healing left leg wound recovers and my right side “shingles” continues to improve … so I can at least try to sleep on my side again.
The two reports said that in May I had only 11 minutes of REM sleep (8pm till told to leave at 5am) and in June .. the report says I had 0 minutes of REM sleep ( I was told not to appear before 9pm, they were late starting as I was told to switch rooms … so probably 10pm start) … but they pushed me out at 3 am so NO REM SLEEP at all.
So I am looking for answers to INSOMNIA. I am very lucky if get four hours of sleep. I always sleep on my side and play by all the “how to get some sleep rules”. The five hospitals had me all wired and hosed up and my throat TRACHED with a hose coming out my neck … so it was about impossible to sleep at all especially with open window curtains and open room doors with shiny hallway lights out there. The hospital papers also listed that they gave me morphine, fentanyl, and MELATONIN to sleep and not try to turn on my side to sleep/have hoses & IV’s come loose.
MELATONIN is very dangerous to MG patients, as the Mayo websites say that the MED is very bad for MG patients like us, who are on IMMUNOSUPPRESSIVE THERAPY, as it “undoes” all that our meds are doing to keep us stable.
My parents were born in Marquette Michigan and then moved from Minneapolis to Tempe Az. Dad’s mother Anna Splies was from WISCONSIN RAPIDS, like her sister ESTHER … who was a milliner in downtown Milwaukee. They say that MG is not contagious or hereditary, BUT there seems to be that MG has a BAD GENE, so that several family members can have similar neuro or muscular diseases. Anna died at a young age of LUPUS. Dad died of MYASTHENIA GRAVIS at home (acute respiratory failure), I have MG (and died at the hospital of ACUTE HYPERCAPNIC RESPIRATORY failure but was resuscitated at 8:37pm on 2-5-2020), and my brother Greg, daughter, and grandkid all have EDS – Ehlers Danlos Syndrome. So all it takes is one bad gene to cascade to other relatives possibly. So hopefully … you too will have success with your new neurologist. It is so hard to know what meds help you, what meds hurt you, and what meds affect adversely the other 5000 MGs of meds, that you must take daily to stay stable and get some much needed SLEEP.