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DoLallyDap

This is my very first post and thread In a former life I was a nurse. Now as my 98 yr old gran puts it I am do lally dap . So this is my first time on here as I have landed in ’ limbo land’ and become a reluctant patient trying to be patient instead of the other side of the fence. I know too much and I wish I knew less . Luckily I have a very supportive GP surgery yay. This year has been a roller coaster of medical appointments, investigations and diagnosis of a few health conditions. Have seen a neurologist, got some neurological symptoms, had an MRI and got glowing white areas, seen opthomology and got macular degeneration in both eyes and druzen, then had a spinal tap and had a very interesting amount of csf going on, and am going to see the neurologist in the second week of November for the full results, and if I am lucky the elusive diagnosis of something or else he has threatened further investigations . Anyway, I just wanted to offer and seek support as I am currently feeling on the scrap heap and scared silly of whatever will they come up with next. ( already got diagnosed this year with diabetes, fibromyalgia and a slab of arthritis in my lower spine ) and it all started when I became concerned about a reduction in my peripheral vision and painful eye ball doh! Never mind fatigue and the myriad of associated problems. Well at least we have had a glorious summer and I have been able to enjoy my garden . Its looking like MS.

Just a short post at silly o clock, will be back. Thank goodness for this site and wonderful MS Society

hi dolallydap (love the name, my mum used to say it)

its such a learning curve, even with your medical knowledge.

i threw away my rule book and tried things i would never have considered before.

these included antidepressants and meditation.

citalopram saw me through a rough time.

mindfulness meditation is so helpful - give it a try.

voluntary work sounds like what you are looking for.

try your nearest ms therapy centre as they welcome volunteers.

don’t think of yourself as on the scrap heap.

none of this is your fault.

your immune system moved the goalposts but it doesnt mean that you can’t ever score again.

carole x

I’m sorry but you must learn to use correct grammar; it should be Lap Dally Do or Do Dap Lally never Do Lally Dap; lol!

My little darlin; unfortunately you could be at the start of lifetime of uncertainty but just roll with the punches. Don’t try and resist MS whatever it is; if it is accept any restrictions and alter them to suit your life; MS always wins.

Your restrictions may; in fact statistics say they will be minimal. The advances made in finding relief for MS in the last 10 years has been stupendous so here’s hoping very soon your Neurologist will be able to offer you a cure.

Here is an article by a doctor of his diagnosis Diagnosing Multiple Sclerosis As you can see it is usually a long drawn out affair (diagnosis); I’m a little sceptical at quick assumptions.

Your Spinal Tap (CSF) is a test only for irregular proteins and oligoclonal bands that more or less tell them something is going on; well you already knew that. The most relevant test is the MRI; your lesions no matter how many or the size.

I do suggest you read A brief beginner’s guide to the brain and MRI as a sticky above.

Good luck and I forgot welcome.

G

Hiya, well in my neck of the woods, we say doolally tap…just a slight regional difference I suspect!

So helo and welcome aboard the good ship MS.

I hang around these ere parts, as I was wrongly dx`d with PPMS for 11 years…nice, eh? So for a good while, I was a proper part of this family, as i made so many buddies and learned such a lot.

My current dx isnt a full one ie

idiopathic spastic paraparesis (possibly genetic)

good name, innit? Very few folk have heard of it, let alone medics!

Anyways, enough about me…hope you get some answers soon and I am sorry to read how many problems you already have without, adding MS into the mix.

luv Pollyx

Thankyou all so much for your kind replies, they are much appreciated .

I have used the MS Society over the years many times for other people diagnosed with this strange and insidious health condition never thinking I would be grateful of it for myself doh!

I have been lucky enough to meet some wonderful people experiencing this yukky condition who have been an inspiration to me for many varied reasons, as with many other health conditions and the many different ways in which we as people approach living with whatever life throws at us. Now it is my turn to go with the flow and be kind to myself and swallow my own professional approach to condition management.

Planning and pacing, goal setting, sleep hygiene ( who ever thought that name up !!) , pain management, CBT, mood management etc.

I managed 6 months in work from January last year part time 22 hrs week as a community nurse, but had to finish on stress caused by intense fatigue and pain, at that point I was thinking I had chronic f syndrome or fibro m. I am now 100% not fit for work, and havnt driven the car this year much due to terrible lack of being able to process info in a hurry and co ordinate appropriate response and then my vision ha ha is slightly dodgy at times. Oh and have a new found skill of being able to fall asleep on a pin any time of day and still sleep all night but luckily not every day phew!

Its hard adjusting to the fact that I now have a blue badge and full disability benefits but hey ho this is now and then was then.

I guess its time to face facts and accept for now I have to hang up my PIN number to practise , if things should improve I can do a return to nursing course. It is frustrating very frustrating psychologically. In fact I recognise acceptance is the hardest part and I now understand where diagnosis although it fundamentally does not change anything is really important on a psychological level to aid acceptance and give a name to ‘it’ and give us something to blame on bad days rather than ourselves .

Or at least allow me in my own head to accept its ok to sleep lots, do little, lay around reading and be a generally lazy slob on off days lol and really appreciate the betterer days in my current context - go me!

Well that got a load of my mind yay ( the bit that still works )