New to Neurosarcoidosis and to this group

[Guest guest]

Hi All,

I found this group yesterday and feel a sense of belonging already.

I was only diagnosised with Neurosarcoidosis 4 weeks ago after being

given an initial diagnosis of Multiple Sclerosis so it's been a rough

few months for Myself, my wife and my blissfully inaware 1 year old

daughter.

My neurologist was all positive and happy on changing the diagnosis

to what he believes to be a more manageable but still chronic

disease. However now as it is sinking in I still feel positive but

want to share with good folks like you who have the same illness as

me.

Currently I am on 40mg Prednisolone/day and 10mg of Methotrexate/week

and the other stuff you take for the side effects. My legs are

feeling sronger while still unsteady, my vision is improving but

unlikely to get much better, however the problems with my hands

haven't improved too much but then again it is only 4 weeks :-)

Got to visit the neurologist tomorrow for a catch up on how I am

feeling and see how the drugs are working am looking forward to it as

I have been suffering quite badly from the ups and downs as a

reaction to both the drugs and the realisation that now suddenly I

have an illness :-)However reading through your stories and support

for eachother is very encouraging and shows me I am not alone.

A little about me I suppose, I am 31 male originally from Ireland but

have been living in London England for the last 3 years. I have had

recurring incidences of Irisitis for the last 6 years but no

definitive reason was ever supplied. 2 1\2 years ago I died from a

Pericardial Infusion around my heart, fortunately I was in hospital

at the time so was revived and treaded back to health again no

specific cause was identified. Then recently my legs started to turn

to 'jell' and walking longer than 10 mins at a strolling pace would

make me literally fall with lack of co-ordination. So off the the doc

I went and the passage to dianosis was set.

All in all I feel quite positive about the future and we'll have to

see how the disease progresses. I would be interested in hearing your

stories and expeiences based on your own personal passage through

this disease.

Thanks for reading this and I wish you all good health and reduced

symptoms for the future.

Cheers

Rod

And remember " We are all in the gutter but some of us are looking at

the stars " - Wilde