Neurosarc Take 2


I was diagnosed with Neurosarcoidosis in June 2007. Diagnosis didn't come easily. I had my first symptom in the April and by the June when I was finally admitted to hospital, I had SEVERE head pain, severe dizzyness, loss of vision, loss of appetite, vomiting, numbness and tingling in limbs, unable to walk unaided, loss of co ordination, loss of use of my right side, EN on lower legs and unable to speak. I was taken straight into resus. I had many tests, 1st result was menengitis (3-26% of neurosarc sufferers get menengitis too) and I was treated with IV antibiotics every 6hrs for 2wks. After this time I was more lucid but still very unwell. I was now able to speak and now knew my name, address, date of birth etc..

I was finally seen by one of the hospitals top Neurologists. He seemed quite perplexed by my case but when he learnt of the EN he immediately thought of neurosarc. I had more tests including eye biopsy and Neurosarc was then confirmed. I was immediately treated with 80mg pred and spent further weeks in the hosp till I was stronger and able to walk and do things for myself etc again.

I was on the high dose of pred for a year then weaned off over ten months. I ceased treatment in Apri 2009 and officially went into remission in July 2009. The Neuro sarc has also left me with Intracranial hypertension so I have spent much time in hosp having fluid drained from my brain. Since Neurosarc I have also been diagnosed with autoimmune arthritis, have had much steroid therapy (finally said no more in March this year 2011) and am on a low level methotrexate injection weekly. I also have Humira injections every two weeks. When I went on these my Rheumy wanted me to go on Remicade as that is also used in Neurosarc so may help prevent relapse but when went back for decision I saw a different Rheumy, my file had been lost and I got put on the Humira because 'it's easier'.

At the end of June this year (2011), my symptoms started to return. At the end of July I was admitted to the hosp as my GP suspected that my neurosarc had returned. The Neuro I saw was insistant it couldn't be the Neurosarc as I didn't have EN (Doh! not everyone does) so he said it must be my IH and discharged me and booked me in for an LP to drain fluid and analyse CSF. This was done but i'd heard nothing. GP looked at my records and said pressure up so prob need another LP and go back on the meds. I then got called into hosp in Sept by my Neuro. I was just expecting him to confirm te IH was playing up and sort me. Well I was a bit shocked as apparently GP had looked at OLD LP results and he Neuro then told me he is 98% sure my Neurosarc IS outta remission. I am awaiting an MRI with contrast and possibly a repeat LP as the results on my CSF have been lost UGH!

The symtoms i'm currently suffering are severe headache and head pain, dizzyness, visual, hearing, taste and smell disturbances, Numbness and tigling in limbs, head and face, shudders/shivvers in head, loss of appetite, mood swings and irritability, thirst, high uring output and insomnia. I am currently only on Amitriptyline for pain management. I was on Morphine but it ceased working. I won't start 'treatment' till tests been done. I'm seeing GP regularly as i'm finding each day a struggle and she keeps chasing up neurology.

Thanks for reading
34yr old female from the UK
Paxtonie Paxtonie
Oct 12, 2011