18 months ago I was fit and active . I'm 51.
I began to lose mobility, my knee and ankles began to ache and swell . The swelling gets so bad I can't walk . It flares up and subsides .
I then developed an optic neuritis in one eye . Spent 5 days in hospital on high dose steroids to save my sight .
Although the swelling has subsided there is permanent damage to the optic nerve .
During tests it was found I had latent TB and possibly Lyme disease so I've been treated for both conditions.
However the mobility issues have remained and is now affecting more joints , elbows, hands as well as both feet and ankles and knees . My feet swell so badly if I'm upright I can't get shoes on . My ankles feel as if they've been hit with a hammer . I can't get up steps or kerbs .
Recently my arms and legs have begun to involuntarily jerk . Especially at night when I'm asleep or relaxed, and it wakes me up .
On slopes or steps I feel off balance .
I've lost weight and sleep a lot .
I'm under :
Optometrist
Musculoskeletal
Rheumatologist
And now neurologist. (Awaiting first appt)
But none of these departments seem to link in . I am worried this could be MS. I had an MRI but this was weeks after the steroids so the optic neuritis had gone down and didn't show on the MRI , no other abnormalities were seen .
No one seems to be bothered in actually investigating the causes of these symptoms, I'm just being treated for the optic neuritis and have had treatment for the latent tb and Lyme . The infectious diseases consultant does not think my symptoms are due to infection and I've had a lumbar puncture which ruled out active TB .
The longer this goes on the more disabled I'm becoming . My mobility is so much more reduced than it was . And is getting worse not better.
Does anyone have any ideas ? I'm not scared of being told it's MS or anything else I'd just rather know but none of the depts are joining the dots .
Anyone gone through similar?
Got a diagnosis?
Please help me try and work this out .