I am feeling really confused at the moment and a little alone.
In 2012 I was very ill. I was off work for 9 months ( I was 50 years old then). I could barely walk and had severe numbness and nerve pain all over my body. I was referred to a neurologist and had the full spectrum of tests, including MRI, LP etc. All came up clear so they diagnosed me with fibromyalgia. Gradually the pain subsided although I could no longer work full time because of the fatigue.
Since then I have had some problems especially with my feet, severe pain when I walk for more than around 10 minutes.
But over the last 3 months again I have been ill. Firstly problems with my left arm causing numbness in my fingers and hand. I went to the doctors and he wants a neck MRI to check for MS because I have other complications, including bladder problems.
I was told the MRI should be within 2 weeks but it is now over 3 and I have heard nothing. I intend to go back to the doctors again on Monday because now I have more symptoms, numbness in my feet which has spread up to my knees now. Sometimes I am struggling to stand, especially after sitting for a while. Also I am getting a lot of headaches and pain behind my eyes, it’s disturbing. To be honest I am pretty scared, my brother had progressive MS, sadly he passed away several years ago but not before being completely bedridden for some time, he gradually deteriorated, memory, paralysis etc. Having seen this I am terrified it might be MS.
Another reason I am returning to see the doctor is because I spoke to another doctor at the same surgery (on phone) about my medication (I am on Pregabalin for the arm which is chronic) on Tuesday and when I asked her about the MRI she said the doctor I saw hadn’t requested one. What? So I am sitting her worried out of my mind waiting for an appointment and one isn’t coming?
I keep on wondering if it’s just the fibromyalgia but the symptoms are bad, could I have been misdiagnosed? Is it MS? Looks like more tests if the doctor pushes for it. To be honest I am just tired of it all and want to be better. I can’t remember the last time I slept all night and didn’t awake with pain. When I was ill in 2012 I had my husband to support me but sadly he died 18 months ago so I feel really alone this time.
Anyone else here diagnosed with fibromyalgia because tests ruled out anything else?