Dear Doc

January 26, 2010

Dear Doctors,

(or anyone else interested)

I have a mystery I’d like solving-so here’s the lowdown:

16 years ago, aged 12 I lost my peripheral vision in both eyes. Leaving me with visual fields like those seen in people with pituitary tumours with pressure on the optic chiasma.(bitemporal hemianopia)

I was obviously immediately sent for an MRI. No tumour.

There was scaring on my brain however.

There was also Oligoclonal bands in my spinal fluid.

I got an MS diagnosis and within the year developed other symptoms: such as not being able to tell hot from cold water, the feeling of spiders running over me. My legs stopped functioning about a year later and I had bad spasms. Months of inability to walk were interspersed with relatively well times for the next few years. Initially I was given high dose Cortisone which appeared to help. I also had a few brief episodes of deteriorated vision, which were helped with low level cortisone.

The scaring on my MRI did not change. Oligoclonal bands were no longer present. MS diagnosis was revoked.

After several years of no diagnosis including psychiatric referral for assessment (dismissed as healthy!) I got a diagnosis of M.E./CFS.

Scaring on brain was put down to head injury as a child. It was briefly suggested that vision problems occurred at head injury time-this can categorically be ruled out as after said head injury I developed a nystagmus which was operated on age 5 and regular (max 6 month interval) eye exams were carried out. Pale optic discs were apparent though.

On the Ayme ability scale, I have been at 0% at my worst, but with careful management of energy seem to have levelled at 30-40%.

My vision loss has still not been explained and within the Uk system you have to be referred via your GP for investigation and as there has been no change in my fields, my GP will not make a referral. My visual acuity has deteriorated over the past 2 years from -1.5 to -2.25 and now -2.00

So if an interested doc happened to google any of my symptoms… I’m intrigued.

One comment

  1. Oooh, good luck. How about a new GP as well?

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