Before diagnosis

Any information helpful


Unsure where to start, but I was diagnosed about 7 years ago with ME. I have since returned to full time employment 4 years ago, but for the last 6 months have been suffering with double/blurred vision which I put down to my 12 hours night shifts (currently employed as Factory Hygiene Manager), and being extremely fatigued. I have since noticed a dark/black dot in front of my left eye. Accompanying this symptom I also experience the following:-

  • Extreme fatigue
  • Frequent trips to the loo
  • Muskoskeletal/joint pain
  • Short attention span/brain fog
  • I also have pins and needles down my left leg (but I have undergone 4 previous spinal surgeries

I visited my GP and presented him with these symptoms and was pleasantly surprised he didn’t consider me a nuisance. He was of the opinion I am suffering from MS, and my previous ME diagnosis was incorrect (diagnosed by ME specialist in 2009). My GP immediately referred me to an Opthalmologist, appointment in September, however I have noticed my left eye in particular worsening. He is then going to refer me to a Neurologist, but have been told I will have a long wait. I went back to my surgery to be seen by another GP who just said “you have an appointment, just sit it out until then”. I am unable to have an MRI as I have a Spinal Cord Stimulator fitted. I also have prolapsed discs in my neck and the question has been posed there must be something “not quite right” as I have suffered from repeated prolapsed discs. I also recently underwent a batch of blood tests which have come back as normal.

How long is the current wait for diagnosis. I feel stuck in limbo and my employers are wanting a diagnosis (I haven’t taken time off sick but it will only be a matter of time and I am worried how I am going to pay my rent/council tax and other essential bills).

Any advice/support would be greatly appreciated by my partner and I.