Hi all! I'm new to this forum and just wanted to share my story and see if it is a familiar story to others with a diagnosis. Essentially I'm in search of a diagnosis and have been 'around the houses' over the last 2 years. Prior to this I was very fit - competing in numerous triathlons. It all seemed to start with numb/tingling feet and back pain (near my shoulder blade as well as lower back) MRI showed nothing untoward for a middle aged bloke! Meanwhile the numbness/tingling also started in rest of legs, hands and face. This was also accompanied with tinnitus although I tend to describe it as less a ringing in the ears but more like a fizzing in my head! Having seen a stubborn and unsympathetic GP (who just wants to treat me with antidepressants) several times I managed to eventually get a private referral to a haematologist and rheumatologist as well as an NHS referral to a neurologist and ENT over the space of 2 years. After nerve conduction the neurologist confirmed peripheral neuropathy and suggested varies drugs. I currently take amitriptyline for that. The strange symptoms continued. The most worrying I found to be brain fog. After seeing the haematologist he agreed I should try B12 injections. Again the GP was reluctant so I self-inject with some I get from Germany and have continued for 1.5 y injecting about once a month. These helped with the brain fog and tend to give a boost of energy for a couple of weeks but sadly doesn't resolve the other symptoms that are pretty random. The latest visit to the GP has resulted in a brain MRI (as I've been complaining about headaches and a feeling similar to a hangover that i describe as 'cloudiness') and thankfully this new GP is much more empathic. Brain MRI normal and so she has suggested referral to the fatigue clinic. From this I gather we are at a stage where it doesn't seem to be anything else so maybe ME/CFS fits. From what I've read it does seem to be a fairly good match for the symptoms and having ruled out most other conditions from the numerous blood tests.
I have found it a bit of a struggle over the last 2 years with the frustration of not just the randomness of the symptoms but also that everyone seems to think that I'm making it up - hyperchondria! I know there is something wrong but all the tests so far are inconclusive/negative.
Does this all sound familiar? Any thoughts and support most welcome.