Not really sure what to write here. Basically had a terrible last 14 months and mentally, I have had enough.
February last year, I had a car accident and luckily my daughter and I walked away from it. A few months later though, I suffered what I now know to have been a mini stroke.
Last August, I noticed a testing tremor and fasciculations in random parts of my body. Facial numbness, very painful left arm/wrist and suddenly some very strong spasms.
What followed was rapid onset fatigue, balance issues and extreme muscular weakness.
After experiencing a nightmare with my GP, who initially and inexplicably suggested I had broken my wrist, then suggested MS and then said I had nothing to worry about, it would all settle down, my wife and I panicked and spent our savings on going private. MRI ruled out MS but picked up the small vessel damage. Spinal MRI picked up Cervical Myelopathy and severe lumbar degeneration. Having already spent over 7k on private consultations with a Neurologist and Spinal Specialist, I was told that surgery would triple our costs and we just didn’t have the money.
NHS neurologist refused to even look at the info we had gained privately, told me my symptoms were psychological and would go away. I asked for a second opinion and was sent to the same NHS neurologist who got me doing all these movement tests in front of a packed in patients waiting room, I felt degraded and to top it all off he got angry with me when I asked him to repeat an instruction and yanked my foot back really hard. At this point I was having real issues with walking. Really struggling and he said he would re assess in 6 months!!
Because at this point it had been a year since I was first referred, I demanded to see a different neurologist at a different hospital. What a difference. She straight away said that Parkinson’s was the most likely diagnosis but I also needed back surgery which she felt would reduce the severity of my symptoms. In 2 months I have been seen, had a verve conduction study and a DatScan.
Trouble is, because of how long this had already taken, my mental health has taken a huge hit. Financial concerns, job security, teenage children, feeling so uncomfortable lol the time, has all taken its toll. I know I am lucky, I have a huge support network at home and my wider friends network but I worry about the impact of my mood swings on my wife and family, my long term availability to work (even though my employer has been fantastic).
How did everyone else cope with all this?