Narcolepsy Diagnosis, letter and descriptors

Hi,

I have been investigated at a sleep clinic (overnight EEG + sleep omnigram) and received a 'likely diagnosis of narcolepsy which has led to significant daytime sleepiness and dysregulated overnight sleep. The latter has been confirmed by recent overnight tests. Her main symptoms are an inability to stay awake or have useful alertness for more than a few hours at a time. She also has disturbing vivid dreams and fragmented overnight sleep' [This also interacts with Chronic Daily migraine (letter from other neurologist includes this) and gives me bizarre states of consciousness. ]

So far so good I hope, but there is a phrase in the final paragraph which may be problematic 'She has made a *partial response* to treatment but is still symptomatic. She also has a long term diagnosis of CFS which also impacts on her daily functioning'.

The 'partial response' refers to my usage of Modafinil to aid wakefulness, but this is problematic since I can only tolerate it occasionally and it leaves me exhausted on days following. I have a GP letter saying 'there is a subsequent fall in energy levels on subsequent days'. I asked the consultant by letter if he would consider rewording this and add something about my inability to wake from these vivid dreams, but I got a phone call from his secretary saying he couldn't reword letters for one patient as he would have to do it for all. Unfortunately my last consultation was brief as he changed the schedule at the last minute and I didn't really have time to fully detail all my problems with the drug and hypnogogic hallucination like dream states I experience, and so he probably had a slightly incomplete and sketchy overview of my condition.

I feel I need to submit a copy of this letter for the diagnosis, and have gone into some detail on the form about how its after effects impact on me, and the limit to the amount I can use, but am concerned that I may be expected to take this drug frequently, which would be disastrous (potential for addiction etc). I wonder if there is any extra advice you could give on this or descriptors that I may have missed and so forth. I also have the referring consultant neurologist letter detailing my symptoms as he recorded them previous to this.

Thankyou for your time.

Jessica23 wrote:

Hi,

I have been investigated at a sleep clinic (overnight EEG + sleep omnigram) and received a 'likely diagnosis of narcolepsy which has led to significant daytime sleepiness and dysregulated overnight sleep. The latter has been confirmed by recent overnight tests. Her main symptoms are an inability to stay awake or have useful alertness for more than a few hours at a time. She also has disturbing vivid dreams and fragmented overnight sleep' [This also interacts with Chronic Daily migraine (letter from other neurologist includes this) and gives me bizarre states of consciousness. ]

So far so good I hope, but there is a phrase in the final paragraph which may be problematic 'She has made a *partial response* to treatment but is still symptomatic. She also has a long term diagnosis of CFS which also impacts on her daily functioning'.

The 'partial response' refers to my usage of Modafinil to aid wakefulness, but this is problematic since I can only tolerate it occasionally and it leaves me exhausted on days following. I have a GP letter saying 'there is a subsequent fall in energy levels on subsequent days'. I asked the consultant by letter if he would consider rewording this and add something about my inability to wake from these vivid dreams, but I got a phone call from his secretary saying he couldn't reword letters for one patient as he would have to do it for all. Unfortunately my last consultation was brief as he changed the schedule at the last minute and I didn't really have time to fully detail all my problems with the drug and hypnogogic hallucination like dream states I experience, and so he probably had a slightly incomplete and sketchy overview of my condition.

I feel I need to submit a copy of this letter for the diagnosis, and have gone into some detail on the form about how its after effects impact on me, and the limit to the amount I can use, but am concerned that I may be expected to take this drug frequently, which would be disastrous (potential for addiction etc). I wonder if there is any extra advice you could give on this or descriptors that I may have missed and so forth. I also have the referring consultant neurologist letter detailing my symptoms as he recorded them previous to this.

Thankyou for your time.

Hi J23,

The report seems to be quite informative.

You can not be forced or expected to take medication that has an adverse effect on you.

If you have written evidence to this effect, then use it, if not, write your own account, you could provide copy of the Information Sheet that comes with the medicine, or print off information that you may find on the Internet.

Sometimes, side effects from medicines can have quite dibilitating effects, in that, they may cause further limitations, this is why it is important to mention any such side effects.

bro58