New Member - Neuroscarcoidosis
 

Good morning/afternoon for some. I am David from the UK (Sunny Glasgow to be precise).

I recently had a pretty bad seizure which resulted in a hospital stay and since I hhave had 3 MRI scans and an EEG. Seems I have extensive sarcoid in my brain following 5 years with sarcoid in the lungs and nose.

While I appreciate many of you have signficantly more severe issues than mine, I am still pretty scared as I have a young family and a business to run.

I have been told to go for a lumbar puncture which does not sound like a nice afternoon out!!

In short, do any of you have experience with Neurosarcoidosis and could you tell me about treatment, side effects and prognosis?

Thanks in advance.

Nice to meet you!!
 

Welcome

I don't know about your condition personally. I am very sorry you are dealing with this. It's not small or little. It's a big interference to you. We do understand that. It's hard to put he brakes on for sickness, but it can urge bring one o their knees. I've been there.

I understand running the business when you're challenged by some ailment. It's very hard. Life keeps coming at you.

For now, your health comes first. If you can delegate some of your workload to employees or ask a trusted family member for now. I'm still amazed at how the working world was very understanding to my situation and stuck by me. It took me a loooonnnnnggg time to get back to where I am now. It didn't come easy.

Do ask questions. Keep asking if you have to.

Kep a journal for now, with as much info as you can put in it.

also post everything to a calendar, reminders, bills due dates, taxes, birthdays, things to do. Things get out of hand quickly when you're not yourself.

It wasn't he loss of money. It was knowing hat I want doing as good of a job that was so hard on me... But I survived !!!

Try the search button above. I'm sure there's others here who have suffered with it.

Give yourself time to heal, ok?

Keep n touch...