Apologies for going Anon … I used to come on here ‘many moons’ ago but as I’m not diagnosed I left.
I’ve had problems for 6 years now - getting progressively worse over that time. I saw a Neuro for a while, but he said he couldn’t see me any more as he’d been told by hospital managers to reduce his follow-up appointments. He asked a colleague of his (a Rheumatologist) for a 2nd opinion and this guy diagnosed me with ME.
Since then my problems have got worse. I now have numbness in my lower left leg, ankle & foot. Slight dropped foot. Muscle stiffness in that same leg - a neuro physio friend couldn’t even bend my ankle upwards, the muscle was like wood. I have needed to increase my pregabalin to 200mg due to the pain in both legs (tight, gripping pain). My fatigue is awful. I had 3 bouts of dizziness/nause last year & although that has subsided I often feel ‘lightheaded’.
I now need to walk with a stick outside due to my balance + difficulty walking with the leg stiffness. My walking is limited to just going round the block. I only go shopping once every 4 or 5 weeks due to the effort of doing it, and once I’ve got there on the bus can only manage 2 shops maximum.
When I was with my Neuro about 2 years ago, he had another doctor with him who suggested to my Neuro that my symptoms were looking like PPMS.
Because I’m not seeing any medical people now, I went to my GP & at first he suggested that it might help me if I found a job!! . Thankfully my neuro-physio friend was so appalled at that she came round and did a complete history and physical examination and wrote a professional report for my GP. Anyway, he’s now changed his mind and wants me to have a 2nd opinion at the National Hospital for Neurology in Queens Square, London. It took him 5 weeks to even write the referral letter & now I’m still waiting for an appointment date.
Sorry this is so long…I’m just feeling very low tonight. I’m finding it hard with no answers and no-one really interested, despite my life having changed beyond recognition. I’m thankful for this new referral but the waiting…and waiting…
I’m sorry if I’ve come on the wrong board, but thank you so much for even reading this - I’m grateful xx