Wednesday, June 08, 2005

As predicted

Just got back from the surgery. I was right, the guy made me feel about an inch small.
I told him about the ulcers on my throat, the sinus headaches and sneezing - he barely glanced at me the whole time I was there and declared it was sinusitus.
I now have a prescription of 10 Ciprofloxacin 250mg tablets, I'm to take 2 a day with water and apparantly all will be well.
As soon as I mentioned the narcolepsy thing he said 'We've had no report through (cursery 2 second glance at the pc) so you'd be best coming back to see your usual dr in a couple of weeks.

Gotta love 'em.
I was in and out in under 5 minutes - that's a record even for me. Most of that time was him filling out the prescription for me.
I hate Doctors..

Going in circles...

I've a Dr's appointment tomorrow with yet another guy I've never seen before *sigh*
Dr's make me nervous. I always feel like a hypochondriac - always have done, even before this all kicked in.
I know I never really get off my chest everything I wanted to say before I walked through their door, I just turn into a little girl who doesn't want to cause a fuss.

I need to stop doing this.
Now.
I need to tell him about my ulcerated throat and sinus problems, but I also need to make it clear that I'd like a second opinion about the CFS diagnosis because of the questions raised by Dr Whatever-his-name-was during my home assessment.
I can't have 2 different illnesses - I just refuse to accept that both of these 'things' could have started at the same time, it has to be one or the other.

I've had 2 replies to my queries regarding the possibility of having both - neither of which were from the London sleep centre, it seems the American research centres are happier to correspond by email than my own countrymen.
Ah well...
The first was a very swift reply from a lass at narcolepsy network inc:
Hi Vicky:

I know of no reason why CFS and narcolepsy would be mutually exclusive,
although I can't say that they are commonly found together, either.
Narcolepsy has been misdiagnosed in some people as depression,
schizophrenia, ADD, ADHD and a myriad of other conditions. If you've been
clinically diagnosed with CFS but this diagnosed hasn't been confirmed with
lab or other definitive tests, it's possible that CFS is a misdiagnosis.
It's also possible that you have narcolepsy in addition to CFS.

Can you describe your cataplexy? When does it occur? What causes you to have
it? What part or parts of your body are affected? What happens exactly? How
long does it last? Can you describe a couple of your cataplexy experiences
for me? Cataplexy can be confusing to someone who doesn't have it.
Hopefully, the information you provide will give me a better sense of
whether it is cataplexy or not. (Clear-cut cataplexy allows for an automatic
diagnosis of narcolepsy, but one must be sure ...)

It would be best for you to have a sleep study for narcolepsy. They will
have to consider any impact CFS could have on the results, but this should
not be a problem for a good sleep doc. I suggest you choose a sleep center
where the director is a sleep/doc neurologist, if possible, because
narcolepsy is a neurological disorder. Most sleep docs have backgrounds in
pulmonology, and many fall short on their knowledge of narcolepsy diagnosis
and treatment. You can find a list of accredited sleep centers at
www.aasmnet.org. You can then check the doctor's background at www.absm.org,
under the link for Diplomates.

Have you considered the possibility that you have another sleep disorder,
such as sleep apnea or Periodic Limb Movement Disorder? These can make you
very sleep during the day because they reduce or prevent the patient from
getting deep, restorative sleep.

If you are diagnosed with narcolepsy, we encourage to join Narcolepsy
Network. We are the only national patient support group for persons with
narcolepsy, and we rely heavily on our membership to sustain operations.
You'll find a description of our member benefits on the Membership page of
our website at www.narcolepsynetwork.org. In particular, our newsletter
serves to empower patients to get the best possible care and maintain the
highest quality of life possible.

Sharon
This was my response, I'm hoping that she gets back to me equally swiftly:

Hi Sharon,
First of all THANKYOU for responding so quickly!
To be honest until I read the description of cataplexy I would not have thought there was a name for it - I just call them 'sleepy fits'.
They tend to come on with a few seconds warning - everything starts feeling a little 'distant' or my hands start tingling a little, it gives me just enough time to either tell someone if I'm out (I rarely go anywhere unaccompanied these days because of them) or to get myself seated comfortably.

They come on in stages:
1. Limbs become too heavy to move, sluured speech/ can only
communicate in grunts
2. unable to move or communicate but still aware of surroundings and
whats going on
3.unable to move or communicate, only vaguely aware of whats going on around me
4. unable to move or communicate, aware of myself and any physical
discomfort - ie if my head has fallen too far forward and I have no
support. Not really aware of anything else.
5. 'asleep'

Usually I can kind of 'come round' within about 20 minutes before it gets to stages 3-4 if it lasts longer than that then I'm going to be out for the count.

When I wake up I tend to be a bit fuzzy headed - this is worse the longer I'm out.
Sometimes I can be like a walking zombie - I have been known to stand looking at a sink full of pots for a good 10 minutes trying to figure out what it is I was going to do.
Needless to say it gets very frustrating.

I have not really figured out what triggers it, it does seem to be quite random though my boyfriend has found that if he catches me before I get too deeply in then a foot massage will bring me around within 5-10 minutes (though that could just be a coincidence)
I haven't noticed that laughter sets it off, quite the opposite - if I can be made to laugh it helps me 'fight it off' but it does happen more frequently when I'm stressed about something.
When I say my limbs become too heavy to move I mean that quite literally, first of all my hands and my arms go - since I usually have chance to sit down I'm not too certain at what point my legs stop working because I'm generally too busy fighting to keep my eyes open and communicate to whomever I'm with not to worry about it.
I can fight it at least half of the time - but when I do it's only for about 20 minutes at the most and then I have a really bad one so I tend to just 'go with it' in the hope that i only lose a maximum of 20-30 minutes from my day instead of the rest of it.
I can have more than 1 attack a day but rarely more than 3.

The other worrying thing is the 'hallucinations' mentioned on the site - I've always had very vivid detailed memorable dreams - ever since I was a kid.
I've numerous times been adamant that I've said or done something that in reality I haven't, I also have the most horrific nightmares - so vivid I can describe them in extreme detail.
To me thats normal, but almost everyone I know says they rarely remember their dreams, let alone in such detail, nor do they mistake dreams for waking life as I have been known to do from time to time.
The second response I got was from the centre for narcolepsy research at the university of Illinois in Chicago

Vicky --
Thanks for your inquiry. However, we cannot readily put your mind at rest about this issue, for several reasons:

1. Different sets of people with narcolepsy have different sets of symptoms.

2. Some people with narcolepsy have other sleep disorders or other medical disorders. It can be difficult to tease these various disorders apart.

3. A person with narcolepsy may experience changing sets of symptoms over time.

4. We still don't have a full and well-confirmed understanding of the nature and causes of narcolepsy. Therefore, specialists will sometimes disagree about a diagnosis of narcolepsy.

However, clear and recurring incidences of cataplexy would generally be considered as confirmation that a person has narcolepsy.
I suggest that you visit the following website for further information:

http://med.stanford.edu/school/Psychiatry/narcolepsy/

He also gave me the name and address of a lady at this institute and suggested I contact her for further information. I may well do so if I have no joy at the dr's tomorrow.

I just wish that there was someone equally helpful in this country I could speak to.

Tuesday, June 07, 2005

So much for schedules...

I had it all timetabled out, got a new journal for the purpose - and end up spending all day in bed, when I wasn't on the toilet that is.

My throat is a raw mass of disgusting ulcers, it's so bad I couldn't swallow when I woke up - and there is so much cattarh down there I'm having difficulty breathing too.
*sigh* On top of that, I'm soooooo thirsty! I've managed to get through an entire bottle of cordial in one day - those things normally last me at least 2 weeks! and as if that's not bad enough, approximately 5-10 minutes after having a drink, I'm on the fecking toilet!

I ache like you wouldn't believe, the back of my mouth and throat feel like I have razors embedded in it that scrape the tissue when I swallow, I keep getting sinus headaches and feeling dizzy.

I'll be glad when I have this gastro endoscopy! at least then they can sort out whatever it is thats causing all this excess acid, wind and nausea. Perhaps it'll cut down on the amount of ulcer attacks I get as well.
*sigh* I guess I'll just have to try and stick to my timetable as much as possible, I need to get back to work. I'm sick of having to deal with the council with regards my benefits.
It may be a little harsh but I've sent them this letter:

To Whom It May Concern,

I am writing to you in complaint with regards to my housing/ council tax benefit (Benefits no. ########.)

I have repeatedly given you all the information that you have requested. You had already received my claim for housing/ council tax benefit on 22/09/04. It then took until 11/01/05 for you to process this claim because somehow my information was getting misplaced between the customer service booth in the town hall and your processing department – again, in the town hall.
This happened on so many occasions that I requested an explanation for the receipts I was being issued from the front desk detailing what information I had provided each time.

I was told that it was policy to ensure that I would not be penalised if I could prove I had given the information in at the time it was requested - but that I would still need to bring it in again as this information still needed to be seen by the person processing my claim.

It seems to me that perhaps a more efficient system needs to be put in place as the current one is obviously somewhat lacking.

On 17/03/05 I received a new claim form from yourselves with a request to fill in and return as soon as possible in order for you to check the details of my existing claim.
On
18/03/05 I did this - along with all requested bank slips, wage slips and proof of incapacity benefit. I know this because I am looking at my receipt as I type.

On
16/04/05 you sent me a BU sus1 in which you informed me that my landlord had indicated I was in arrears and that you were suspending my benefit as of 28/03/05.
I telephoned your department and was told that if an error had been made my landlord would need to write to you or I could provide proof in the form of receipts or bank statements.


On
25/04/05 my landlord did write and tell you an error had been made but instead of reinstating my benefit I received another letter from yourselves.

On 13/05/05 you sent me a BU sus(VF)1 in which you requested information of a cheque paid into my account, there was no mention made of the letter dated 16/04/05 yet the date of my claims suspension was exactly the same - 28/03/05.

If both enquiries were from the same information – why were both requests not made at the same time? It seems incredibly inefficient to drag out a claim in this manner. Surely by asking for all the necessary information at once it could be settled once and for all, thereby freeing up time for another claim to be dealt with.


I made an appointment to speak to one of your advisors on
23/05/05 I brought the entire file of correspondence between myself, my landlord and your department. This included payslips, bank statements, receipts, Dr's letters and all paperwork pertaining to the incapacity benefit and my illness in general.
This is what the CSO (Jackie Rimmer) wrote on the counter report:

Miss Stringer has called to the counter to chase up her claim which has been suspended.
We wrote to her on
13/05/2005, BU sus 1 letter, stating that she has not returned her claim form.
This was received in our office on
18/03/2005.

We also asked Miss Stringer about details of a cheque for £980.00 that was paid into her bank account on
11/01/2005 - this was a housing benefit payment from us -

We have now received all the information we have requested and have proof of her incapacity benefit.

Miss Stringer is not in arrears with her rent at the moment.

Would you please re-instate this claim as a matter of urgency as this matter is causing her a great deal of stress.

So you can imagine my surprise this morning when I opened a letter from yourselves dated 31/05/05 - a BU Inter(VF) Follow-up.

It starts by thanking me for returning the form you sent on 14/03/05.
Yes, that would be the form you originally claimed not to have received when you sent me form BU sus(VF)1 dated 13/05/05 as stated on the above extract of the customer services counter report.

It goes on to state that you need more information from me.
Despite that same report stating that:

We have now received all the information we have requested.

Nothing had been previously requested of me regarding the DLA and as it is usually disregarded as income by every other benefit I was not expecting any such request for information at all.

Since a request has been made however, once again I have to query why this was not previously asked of me.

Why is resolution of my claim being strung out in such a way?

At this moment in time I’m afraid I cannot give you this information as I have not yet received notification from the DWP regarding my claim for DLA. Nor do I have any idea when I will hear back from them.

What I can tell you is that every time there is a set back to my claim causing me stress and upset, it sets my recovery back by weeks if not months.
I have no problem with the staff on the front desk – Both Bob Pierson and Jackie Rimmer were courteous, understanding and made sure to go over everything in detail to ensure there were no errors.

It appears to be the processing department who find it difficult to do the same.

I would like you to bear in mind that I am not claiming benefit because I wish to avoid work, I am claiming benefit because I have paid my taxes and my national insurance so that should illness strike (as it so obviously has) and I am unable to work I would at least have the ability to keep a roof over my head!
I was forced to leave a well paying job and end up in a large amount of debt due to illness - the joy I feel every time I see my bank balance now is just indescribable - that 90% drop in income just does it for me every time!
Though to be fair, in such a busy department perhaps it has escaped your notice that I am not claiming benefits for kicks.

The fact that I cannot at present lead a ‘normal’ life is not helped by the fact that every time I have to make a phone call to your selves or organise for friends or family to accompany me into town so that I can try to chase up my claim, I am left physically, mentally and emotionally wrung out.

I can only assume that either I have been singled out for some kind of harassment or that your processing department is in fact grossly incompetent and every claimant has to undergo this drawn out ‘procedure’.
Needless to say, neither scenario reflects well upon your selves.

I would appreciate it if something could be sorted out as soon as possible so that I can concentrate on returning to a state of health conducive to work.

However, if this state of affairs continues I shall have no choice but to look at what legal or media based alternatives I have to encourage you to organise your department properly, because at present I am hard pressed to understand just what I have paid my national insurance contributions for.

Yours sincerely

Vicky Stringer.

I actually emailed this to them on friday, no doubt it will be ignored - but that's ok, I fully intend to both fax and post a copy tomorrow and I'm going to pop into the offices on wednesday to hand one in personally. Whilst awaiting some kind of response I also intend to go to the C.A.B. in Swinton with mum on Friday - I'm getting just a bit sick of all the fucking around from them.

I even recieved another letter this morning stating that they've recalculated my benefit due to a change in my income, my questions are "what change? when?"
If I were that incompetant at my job I'd have been fired by now.
I certainly wouldn't have the company holding the position open for me after nearly a years sickness! Especially when they are fully aware that I still have no estimate on the time it will take before I'm fit for work again.
If I wasn't already ill the stress of dealing with the benefits department at the town hall would certainly make me so!
Bastards.