Discharged

[Lady4]

Absolutely fuming. Just received a letter following referral saying I quote:

The visual hallucinations that my son is suffering from do not fit migrane .... I could of told him that.

I do not think that this is part of a psychiatric illness .... goes without saying

But the real gem:

I think a neurological condition is extremely unlikely given the array of symptoms...

But given his past medical history and a new concern, we will request an MRI head for reassurance.*

* This I was told was for my reassurance

[tabey]

wow I’m sorry doctors have such a way with words

At least you have a mri for your son that’s some good news

I wish you both well

Tabe

[Lady4 in reply to tabey]

Thanks Tabe, I kinda saw red when I read it especially as on the front in bold letters was the word "discharged" even before I read the content.

Blurry vision yesterday so eye test tomorrow.

[gomelgo]

when I was first diagnosed, that neurologist REFUSED numerous times to order a brain MRI. I did eventually get one but went through 4 more consults to get to one that understood. Horrible system.

[Lady4]

Hope it came back clear.

[Shimmyaway in reply to Lady4]

I am unsure what 'clear ' actually means. My MRI came back from neurology with the words, 'signal change' .. but did not state this was a confirmation of the 'likely' fnd diagnosis .. which it seems to have been, and of course the perfect reason for ... you guessed it, DISCHARGE ...though with a referral to neuro psychiatry .. likewise now under DISCHARGE. aka 'we can't help you .. clear off'. Same old FND story!

[Lady4 in reply to Shimmyaway]

I don't know what "signal change" means, I was referring to any significant lesions

Someone should really address the format of their letters and how the recipient feels (the words "discharged" in bold first and foremost is so disheartening) before you read the "body text".

[Shimmyaway]

I think the format you mention must be peculiar to the Children's Hosp .. but at least they are telling you about the discharge, however insensitively, which is not always the case. I had to decipher 'signal change' myself .. was not explained by the neuro on the phone. I think it means the brain signalling/ brain network is not functioning correctly, but the MRI cannot specify what brain networks exactly. It's back to the DIY for us and many more. I am at least glad you are getting an MRI on the NHS ..and fingers crossed for no lesions.

[Lady4 in reply to Shimmyaway]

But as they know its a signal blip there should be rehabilitation referrals to bring back the autonomic movements/reactions by positive affirmation and actions.

[Shimmyaway in reply to Lady4]

I would love that to happen but I don't know of any facility/expertise for fnd rehab in the B area or even for support with mental health (if required) Community MH have put in writing to the GP they have no expertise with FND and refuse referrals, as do the Barberry. Not sure what my sympathetic/frustrated GP will do next ..appt pending.

What are the next steps for your son?

[Lady4 in reply to Shimmyaway]

Still waiting MRI results and blue light filter glasses for screen time. I wasn't happy about him reading book on internet, white text on black background as I thought this would cause eye strain but Optician said as long as he applies the 20/30 rule thats ok. My agrument was also it would take him longer to settle, I guess I was kinda annoyed at myself for not coming up an hour earlier too.

He has missed a lot of school again and I have to make sure he isn't absent for kong periods, otherwise he comes off role.

[Lady4]

Just an update, MRI normal, referral to adult neurology, so the journey continues..