Discussions By Condition: I cannot get a diagnosis.

Help with Diagnosis

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: Bronnie Adams
  • January 3, 2011
  • 03:42 PM

Hi All,

I am new here so I am not sure if I am posting in the correct section, apologies in advance (Mod please move or delete as appropriate, thank you)

I am trying to help a very dear friend of mine to get a correct diagnosis for her symptoms:

Here it goes:


• Went to Boston end August - nearly fainted in pharmacy - had worsening pain in head since then.
• Initially went for an eye test on 6/10/2010 because of pain behind right eye, because of the pain in head, they also performed a visual/peripheral vision test, because initial tests were so bad - repeated test next day - same result. vision in right eye limited - of 29 presented missed 22.
• Went to Moorfields - 9/10/2010 - diagnosis - right reduced optic nerve function; right reduced sensation and power; reduced visual field on right. Transferred to Royal london for further investigation.
• Royal London - had CT scan and full blood test - came back clear - referred back to Moorfields.
• Saw (Dr) 15/10/2010 - Consultant Neurologist at London Bridge (Privately) who said I had reduced visual fields on right; reduced sensation on right; weakness on right limbs; pin ****k reduced on right; vibration reduced on right including at clavicle. He requested a MRI Scan for following day.
• Saw (Dr) 27/10/2010 - MRI scan showed minor tonsillar herniation - but not overly worried by it. He referred me onto (DR) Opthalmic and Retinal Surgeon.
• Saw (Dr) 10.11.2010 - right eye showed gross constriction only small inland of vision centrally; 4 of 17 colour plates read in right. No posterior scleral thickening; no obvious fluid; OCT showed normal foveal contour. Passed back to Moorfields.
• 24.11.2010 - Saw privately (Dr) Consultant Neurologist who requested I go into Charing Cross hospital for a number of days for tests. (Had full blood test - and MRI Scan plus contrast - and electroretinogram.) All 3 came back clear, with only minor differences in electroretinogram. Confirmed not a migraine but don’t know what.
• Saw Moorfields 29.11.2010 -(Dr) referred me to electrophysiology department for tests on 16/12/2010 where I had a Pattern Electroretinogram; Electroretinogram; Visual - evoked potential; electro-oculogram - waiting results.


• Severe pain in head focus behind right eye - moving over to other side. feels like my head is about to explode - pressure. Impossible to focus / concentrate - feels like I have a heartbeat in my head. Pain increasing since August.
• Can’t see - vision getting worse - with occasional double vision.
• Violently sick nearly every night
• Dribble on right side of mouth, and starting having difficultly with words
• Weakness in right side - lack of feeling compared to left
• Eyes glaze over can’t see - floaters 1/2 metre wide block vision
• Severe neck spasms (6 in half an hour - 2 days ago)
• gushing nosebleeds lasting up to 30mins
• Hands shaking
• Exhausted and severe temperature changes
• Treating with pills - but nothing I have been given has had any effect.
• Fainting - black out last week - 15 mins before I was back to normal

I have done a lot of research, as although each specialist has confirmed that there is a serious problem, no one knows what it is or what to do, and I can’t carry on with it like this.

I saw article by Dr Matharu on Deep Brain Stimulation at the National Neurologist Hospital, although the symptoms were not quite the same (my pain in constant, and has been for months) - the pain described by some patients of cluster headaches was similar - “ It was like someone had put a red-hot poker into my left eye and was wiggling it about. The headaches always started with a sudden pain behind my left eye; my eyes got red and swollen and sweat poured off my face. I also felt nauseous. I couldn’t stand still, sit down or go to bed.”

Any help at all would be most welcome, and I have absolutely no idea what to do next!

Thank you so much.

Best wishes,


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