On Monday 4th October 2009 I had acute onset of what I now believe is peripheral neuropathy. I had tiredness and unusual heaviness in my legs for two weeks preceding this date. I was, prior to my current problem, a daily runner (between 5-10 miles daily.) On the Friday before the onset I ran 5 miles and experience a heavy feeling in my legs, particulary the thigh muscles. Over the weekend I developed pins and needles, dizziness and very heavy feeling in my thigh and calves. This also occured in my biceps.
By the Monday I was in a very bad state. The heaviness was very severe, I had pins and needles in my hands (ulnar nerve side,) my left foot felt like it was in shoe filled with water. I also experienced brusing on my thighs. If I lifted something with my arms I get what I can only describe as an instant pulled muscle sensation. I also developed a cold sensitivity in my hands. It took me about 3-4 months to feel any recovery from these symptoms.
Since then I have gradually improved. I still experience a degree of heaviness in my legs. I do not have any lack of strength (I don't think I ever did, mostly sensory.) I can run if I want but I will suffer weeks to months of severe heaviness after exerting myself. If I walk too quickly I experience cramping in my calves (initially I couldn't walk up a step without this problem.) I don't have cramping when I run - only afterwards. Many of the other symptoms still persist to a lesser degree.
I am 30 years old, male, and live in the UK. To date I have had 3 blood tests which I believe covered all the obvious problems (all normal.) The last doctor I spoke to suggested PVFS (my brother and mother had swine flu 3-4 weeks before I became ill - altough I never experienced any symptoms.)
As I guess is typical with many people in my position I have spent countless hours researching symptoms. So far nothing matches. Bits from many illnesses seem to match but nothing concrete.
What I would like to know is how I should proceed. Does this sound like PVFS/ME/CFS? Should I be looking for a specialist in a particular area? Does this match any known neuropathy or similar illness?
Have you seen a neurologist? They would be able to diagnose a neurological disorder.
It sounds like it could be PVFS but I would think you would know if you had a virus causing this. See what your GP says about seeing a neurologist.
I haven't seen a neurologist. To be honest I thought I would be referred to a specialist by the different doctors I have seen, but so far they seem to be satisfied with the blood work and the fact that I can walk in and out of their offices : ) When I pushed for more help I have mostly had suggestions that stress and/or hypochondria is the cause. It's all quite frustrating when you feel like you have just run a marathon, 24/7.
One thing I forgot to mention: Around the same time as the other symptoms I also developed annular, central clearing rashes on my upper body, biceps and left calf, 1-2 inches across. I still have ones on my left calf and on the side my rib cage (both sides.) (Not many ticks around here so I don't think Lyme disease is a possibility.) Maybe that means something to someone?
I would really appreciate as much feedback as I can get before going back to the doctors. Any further comments would be greatly appreciated!
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