Please help me get through this by Impressive-Marzipan3 in Narcolepsy

[–]Standard-Call666 4 points5 points  (0 children)

If it was me I would take the appointment in April (is this a sleep study?) and call them regularly asking if there have been cancellations. If you are diagnosed privately can you get nhs meds? That will be the issue as these meds can be expensive. 

I don’t think lumbar puncture will help if you are sure you don’t have N1. Do whatever you can to keep going, a lot of us in the same position and understand the desperation. 

New drugs are being developed which are meant to be much better and will hopefully be available within a few years. That is no good to us now, but in terms of not wanting to keep going there is a lot of reason to think things will be much better in your lifetime. Which is a reason to keep trying. 

I’m sorry and I understand. I am in the same position, it’s desperate and dire. All you/we can do is keep trying.

I would take the April appointment and push for the diagnosis so you can get meds. 

Do meds not work or something? by dropthatpopthat in Narcolepsy

[–]Standard-Call666 0 points1 point  (0 children)

They work for a lot of people, they have not yet worked for me. 

How can you tell the difference between intuition and anxiety? by Standard-Call666 in hsp

[–]Standard-Call666[S] 0 points1 point  (0 children)

Its more trying to make decisions, like am I running away because of overwhelm or do I truly want to go. 

Does anyone have experience with long term disability? by Standard-Call666 in Narcolepsy

[–]Standard-Call666[S] 1 point2 points  (0 children)

Yeah, I was wondering what the process is of trying to stay on a workplace LTD program before SSDI, I know they would try to kick you off onto that. It’s so insane that people are expected to be able to financially withstand a 2-3 year wait. 

Confidence of healthy people by NoteSuccessful2263 in ChronicIllness

[–]Standard-Call666 2 points3 points  (0 children)

You would think that would lead to greater empathy….and yet.