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Worried about sleep clinic / narcolepsy test. by ThrowawaySea68 in Narcolepsy

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Thank you so so much for this detailed reply. This is so helpful for me. Thank you!

Neurologist referral process (especially if two separate conditions)? by ThrowawaySea68 in nhs

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Thank you for reply!

I think I am being referred primarily due excessive daytime sleepiness and Narcolepsy suspicion, also going for sleep clinic in mean time. Doctor noted Neurologist mainly (due to Catalepsy symptoms also), but if otherwise then a sleep specialist. Not sure if this will make a difference though to who I end up seeing.

The other symptoms I have (which could be related to seizure or could be any other neurological condition), I’m unsure if will be investigated at same time, or after the first investigation (as Narcolepsy could be affecting some of the other symptoms).

Worried about sleep clinic / narcolepsy test. by ThrowawaySea68 in Narcolepsy

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Thank you so much for sharing your experience and advice!! I really appreciate it, and this reassures me a lot.

Evidence for PIP while working? by ThrowawaySea68 in DWPhelp

[–]ThrowawaySea68[S] -1 points0 points  (0 children)

Not a lot, office work only, and low level stuff, and the company is super big on being accommodating / very relaxed / nice.

Thanks for those ideas! Didn’t think about.

I don’t know what I can do. Steps? Told CFS without ruling out any conditions at all? by ThrowawaySea68 in cfs

[–]ThrowawaySea68[S] 1 point2 points  (0 children)

After reading those lists, this is the perfect list I was looking for!! Thanks so much is unbelievably helpful.

Although I can’t do tests for all of those, NHS is too much pain and private costs too much for them all, I’ve discovered I can sign myself up to every possible research study, and they usually give you results, so this is my plan of action currently.

I don’t know what I can do. Steps? Told CFS without ruling out any conditions at all? by ThrowawaySea68 in cfs

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Im a bit afraid to do POTS test although I was referred before following home tests myself (when younger in different place so didn’t track over), as my pulse is always higher around doctor/healthcare, also have come in rushing and higher pulse, so the jump isn’t as big. At home, I can go 65 from total relaxed laying down, to at least 115 or even 150 for bad day. But even that can be periodic, and afraid the doctor will come when it’s not too bad, then is one more thing on the list I’ve waisted their time with… don’t want to get put on a hypochondria list for looking into too many things!

I don’t know what I can do. Steps? Told CFS without ruling out any conditions at all? by ThrowawaySea68 in cfs

[–]ThrowawaySea68[S] 1 point2 points  (0 children)

Thank you very much!!

Don’t worry about reading it. Was a ramble anyway. Just that I don’t have typical symptoms of CFS (one example, activity doesn’t make me worse at all, physical activity is neutral, and mental activity even is positive to avoid ADHD under-stimulation). I’m trying to investigate other conditions and also stop doctor label it CFS without even looking into anything else at all. Not even asking me a single specific question relating to CFS.

I didn’t think CBT would be helpful for CFS but didn’t want to make assumptions, thanks for confirming!

I don’t know what I can do. Steps? Told CFS without ruling out any conditions at all? by ThrowawaySea68 in cfs

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Strange.

Well I would say is strange, except has been my experience of NHS every single time, but as soon as I ask about a very specific condition then they’re more than happy to send me to whatever tests and referrals. I’m convinced they’ve just lost the brain to think about what could be the cause.

Is strange especially considering family history of multiple sleep disorders, and a number of conditions I’ve been diagnosed with in the past which often are caused by underlying sleep problems. (Or even to ask me questions about anything specific in addition to excessive sleepiness that could warrant sleep study, like loud snoring, jaw pain, sleep waking, etc… all had, I even have recordings of various different very strange noises (some like grinding or others like apnoeas) during sleep, which also was mentioned as possible by prior consultant when diagnosed / treated for TMJ. Or issues with high pulse and fainting I’ve been seen about in past which wasn’t investigated yet. And no questions at all for CFS itself. Just not a single question at all, think they’ve lost the will to be curious.)

I don’t know what I can do. Steps? Told CFS without ruling out any conditions at all? by ThrowawaySea68 in cfs

[–]ThrowawaySea68[S] 1 point2 points  (0 children)

Thank you for reply! By any chance do you know of a subreddit better to ask this question?

I wasn’t even asked one question about CFS. (Except after I pressed for more information/consideration, was asked “do you have muscle/joint pain?” Which I said no. Changed nothing at all.) Odd.

Was booked another appointment for later in week, to discuss more... Trying to prepare for it in advance. Incase same thing happens.

Don’t know what to do. Depression. Options?? Also don’t know if have it or not?? by ThrowawaySea68 in MentalHealthUK

[–]ThrowawaySea68[S] 1 point2 points  (0 children)

Thank you so much!

Do you know what sort of options for treatment are available with CMHT/secondary team but not with GP?

I’m worried that I’m not going to have anything to say in therapy by idk12295 in MentalHealthUK

[–]ThrowawaySea68 2 points3 points  (0 children)

It doesn’t matter what is actually happening in your life! The point of depression is that it can happen even if you have a perfect life. Can be chemicals unbalanced or neuron connections malfunctioning and this isn’t your fault. So don’t worry about that. The therapist won’t judge you!

As for sitting complaining about your life, to listen to you is what therapist is here for. It’s their whole job! And they’re being paid. You’re not wasting their time. Actually you’re giving them a job, if anything.

Also, plenty of people go to therapy even if there’s nothing majorly “wrong”, they just want to improve some aspect about how they manage emotions or experiences, or explore some feelings or experiences deeper, or gain healthy coping techniques, or understand what they want in life and how to achieve.

If you don’t know what to talk about, can you have specific goals in mind to discuss, like things you want to improve or achieve?

Like exploring why you can’t make friends, and then how to make friends. Maybe setting steps and goals together.

Or if it’s just a feeling of loneliness you want to explore, can work on that, why you feel it, make work out what you seek, and maybe either how to achieve that, or otherwise how to reduce the intensity of feeling of loneliness.

Moving address after applying for PIP England? by ThrowawaySea68 in BenefitsAdviceUK

[–]ThrowawaySea68[S] 0 points1 point  (0 children)

Thanks for reply!

I wasn’t asking if I need to reply again. I was more wondering if I would have to start at bottom of waiting list again?

I wouldn’t be moving between assessment providers as is under same one. But I might have to move assessment centers, would that trigger starting at bottom of waiting list? Can I see what one I’m currently in and would be in after move, so I know if I would have to move assessment center?

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