Sleep Study

[Michelle]

Some of you may already know that I recently travelled to Papworth Hospital to undergo a Sleep Study.

I have copied and pasted the post that I wrote to fellow mods and admin. I am just too shattered to write it all again

 

Regards

 

Michelle

 

 

Hi Guys,

 

I'm back and totally cream crackered. The sleep study itself was very interesting. I felt it was a form of torture If you're not keen on anything wrapped around your throat overnight, then don't bother having one. I would imagine it would freak you out. I certainly wasn't expecting two lots of fine tubes inserted into my nostrils,or being told to keep my eyes shut, and try to sleep for 20minutes during the course of three day time tests. By the time Andrew picked me up at 4pm ,I didn't know whether I was coming or going .

Still, I got to recieve my results there and then. And it's official, I have CFS. I was also told, that even though I sleep for long periods of time, my brain is still very active.Oh, and I snore I kind of knew that The doctor in charge told me that sleeping during the daytime is really bad for me,and rather than going to bed I must sit near a window,or go outside. This conjured up visions of old folk sitting by their care home windows eagerly awaiting a visit from their family. These results will now be passed to my neuro,and the CFS specilaist that I have been seeing for the last 6months.

 

Will probably post this on the board,just to save me writing again.

[gillshutt]

Sorry you have CFS but at least you can put a name to it now ((xx))

 

Sounds strange to go away for a sleep study and come back tired

 

What are you supposed to do when it's raining... stick your head and a brollie out the window?

 

Hugs and hope you manage a rest... but no sleep until tonight ((xx))

[Hezza]

Thanks for sharing Michelle

How ironic that a sleep study leaves you feeling more tired I'm amazed that you managed to sleep at all!!

 

Good to have you back - I, for one, have missed you

[Shirl]

I do hope there is much night time sleeping going on at your place this weekend, Michelle.

 

Re the overactive 'sleeping' brain - because of my interactive dreams, I take an antidepressant that deepens my kip at night. If I sleep in the daytime, I dream interactively again (no drug). This happened today as I had my catheter changed and, for various reasons, was knocked out enough to fall asleep in front of a (favourite) scrapbooking TV programme!

 

I wonder if the antidepressant thing is an official idea now - no one has challenged meon it. Who knows.

 

Anyway, you are back where you belong and that is good.

[Lindyloo]

Hi Mish

 

Glad you back in your own bed tonight.... you poor thing you must be so tired.... have lots of rest now...and lots of nice treats....

 

Chat you soon hunni

 

love lindaxxxxxxxxxxxxxxxxx

[Sharon]

I hope you had a good sleep last night.

At least you can adapt your lifestyle to improve your condition now. ((()))

 

My dr thought I had CFS at first, but my neuro thinks it`s MS, I wonder who will be right???

[Michelle]

Slept really well guys. So, thanks for your wishes

 

Sharon,

 

I do nothing by halfs. I was diagnosed with MS first, and now 4 years down the line I get a CFS dx. I now have to tick from my list the stroke/eye specialist that I am seeing next month. In the 4 years that I have been ill I have seen specialists every 3 to 6 months. I long for the day when they will say we willl see you in a years time << I love this funny face.

I would have thought by now that the doctors would be able to see the distinct patterns that are associated between MS and CFS. The trouble comes when some of the symptoms overlap one another. So, good luck! I am hoping that my specialist will now start meon antivirals,and if these work i might be able to cut down on my other meds. That's something I will have to discuss with him when I get my next appointment. In the meantime,it's a case of a day at a time,and living it the best way I can.

 

Hope your weekend is a s good as you make it.

 

Michelle

[mayb]

Hi mich - glad you survived to tell the tale. It sounded more like sleep deprivation than a sleep over!! Hope you are ignoring advice not to sleep during the day until you at least get over this episode. I wonder how you stop yourself from sleeping as I don't always make an active decision on that one and only know I did it when I wake up!!

 

I was interested to hear that they can definitely make a diagnosis of CFS by checking your sleep patterns. This is not the criteria laid down by the NICE guidelines as far as I can remember and it raises questions about what CFS is and how it is diagnosed. As you know I have not got an MS diagnosis although like you I have symptoms that look like MS, particularly as they aren't anything else. I also have been told I have underlying CFS although no reasons were given for this particular diagnosis. I do not have continuous throat infections, swollen glands or muscle pains which are part of CFS apparently. However, I do have fatigue, nerve pain and eye problems amongst other things. The tiredness bit as I understand it in CFS is described as the sort of tiredness after activity which is not relieved by rest - so no point in sleeping I suppose.

 

I don't understand the virus bit as I understood that MS was caused by a virus and CFS was caused by a virus??? So can they say which virus is involved in each diagnosis and then treat that individually or do they just give you antivirals and if so why don't MS patients get antivirals too? I am not aware of having been tested for virus infections and my lumbar puncture was normal - so assume no virus found?

 

I do have a feeling that MS and CFS must be very closely connected and wonder if the same virus causes these slightly different reactions. In which case the virus must have been caught in childhood. However, unlike in the past where people have been diagnosed with MS without MRI results, the NICE guidelines are very specific as to how you arrive at an MS diagnosis. If you don't tick these boxes you don't have MS. That leaves quite a few people without a name for their problems and sometimes given a CFS diagnosis??

 

I am glad you have been given a definitive answer mich and the possibility of some real treatment for this - anything is better than limboland as we know.

[linds]

Hi Misch,

Pleased after all this time you have an answer. There is now light at the end of the tunnel. You put so much in to helping others and do it with great compassion. I for one value as one of our mods. Lindsxx PS is there some distinct difference in symptoms between CFS and MS??

[mayb]

I totally agree with you linds and well said.

 

I think that this link is very useful in sorting out the CFS symptoms. http://www.kcl.ac.uk/projects/cfs/patients/

 

It is from Kings College London and answers an awful lot of questions. I found it very useful and I could see that some of my symptoms did correlate with this but I was also missing some of the major pointers. The one thing it did tell me that I hadn't known, was that you can have nerve damage with CFS. As I am also missing some major pointers for MS ie MRI and LP results I am none the wiser really. I believe in getting to know everything I can about my possible diagnosis. The following gives a short reply to your question linds. What do you think? Do you fit this bill mich? I think that if you have severe problems and a CFS diagnosis, you can now claim some components of disability benefits if your doctor confirms this is your diagnosis and the affects it has on you.

 

 

 

 

[Michelle]

Hi Mary,

 

I don't have all the symptoms associated with CFS. The sleep study was also to rule out sleep disorders,like sleep apnoea. As for benefits, I already get dla,as I have right sided weakness,that makes it impossible for me to drive without my hand controls. The lack of mobility with moi, stems from my brain lesions. The diagnosis of CFS comes from months of consultations with... wait for it, an infectious disease specialist who also specialises in CFS.

There are some school of thoughts, that CFS is caused by the same virus as MS. To be honest guys I step aside from all this, as if I was to think too much about it,I would go nuts.

I don't think they really know. This is why I have offered to be a guinea pig for my specialist. Hopefully, these kind of tests along with lots of study by the professionals, will pave the way to make diagnosis easier for the people of tomorrow.

I also found out that you can have brain lesions with CFS. As for the LP. I had no O bands,but I did have inflammation,and higher than normal pressure,which meant some of my fluid was drained off. So, they knew something was going on in my SP,they just couldn't put a name to it.

It's now time to find out why I go blind in one eye As long as they don't probe me with big needles, I will be fine

One tired bunny here. Must have my shower,and get pottering.

 

Michelle

 

P.S Thanks for the link. It's really informative,and I'm sure will be helpful to others. BTW I love it when we can dispel the theory that it's all in ones head. It was one of the reasons I agreed to CBT assessments with the psychologist. I hate any kind of stigma that's associated with emotional health issues. must go >>>>>>>>>>>>>>>

[mayb]

I am not sure whether it is a problem with CFS diagnositics or MS diagnostics but if problems mimic one and then are called another because of lack of test results that are required for MS then I would wonder about the selected test results required for an MS diagnosis myself.

 

I understand your reluctance to go there mich and also your relief at having your problems 'named' in this way. Unfortunately for me I cannot get away from my own perspective and the need to know hasn't been satisfied by being told I might never know.

 

I would say that it is normal when you reach my age to have brain lesions (55 now to think I was only 53 when I started to join in here). Therefore, it is not the presence of brain lesions that is required but a certain size and number. So presumably if I had the average of a 55 year old when I was 40 I may have got a diagnosis. However, I cannot have more than the average for a 55 year old as my scan was reported as 'norma'l. The trouble with that criteria being that I may not be your average 55 year old.

 

What makes me particularly worried is that they are prepared to donate a diagnosis, in my case, which does not fit the bill as long as the bill it doesn't fit is CFS. (obviously I have not had your particular experience with the diagnosis mich) However, as it didn't fit the bill of MS either, despite the symptoms being more similar for MS than CFS, I have not got an MS diagnosis. That is the problem really - I know they have not actually made a diagnosis just given me a name to use in place of one. I don't want to have anything, but as I know these things are not emotional or imaginary and tests have shown that too, I cannot be satisfied with still not knowing and wondering whether there is some treatment to be invented at some point that I could have but wont get because of it.

 

Well that was a long one wasn't it. I promise not to do that again but I needed to air that one as it is what is driving me mad at the moment. I am sure that I would feel a lot bette if I could accept this situation and work with it, as you have so rightly done mich and you have given a lot to all of us in the process of being a guinea pig too . I am also aware of Shirl's less than smooth journey through this mess. What is the point of banging your head on a brick wall I ask myself each time I do it.

 

- I expect you can tell I haven't seen my psychologist for a while - I forgot the last appointment and have had a long wait for another one. She has never said I can't eat chocolate and as we all know it cures absolutely everything and I have just bought 5 Mars Bars for a

[Shirl]

I am not sure whether it is a problem with CFS diagnostics or MS diagnostics but...I cannot be satisfied with still not knowing and wondering whether there is some treatment to be invented at some point that I could have but wont get because of it...I am also aware of Shirl's less than smooth journey through this mess. What is the point of banging your head on a brick wall I ask myself each time I do it.

Ah Mary - I am writing to you this morning...I SO know how you feel about all this and I also know how tiring all these tests and appointments are for Michelle.

 

We human beans are all so different. I think Michelle is a runner bean, I am definitely a broad bean and Mary is a hybrid! I resist the tempation to say we are all half-baked beans.

 

One day, there will be an announcement that there is a brand new human bean neurological condition - Michelle and Mary will have helped pave the way and I will have, I hope, helped those waiting for it now.

 

Off to see my Neuro tomorrow afternoon, folks - I can just about forgive him for calling me in during Wimbledon and on a TV craft afternoon!

[mayb]

Shirl you always manage to put things into words that soothe and encourage so thank you for that. I quite agree with what you have said - I hope to be a walking bean soon and graduate to a runner bean as time goes on. Right now I am a hot and bothered bean and although I hate to complain about the weather I am not at my best in this heat - so a rather tired and floppy bean right now. Now those usually go into recycling bins and hopefully emerge as brand new beans when scattered as compost in another field. I look forward to that day!!

[Michelle]

I feel like a couch potato today

 

Michelle.

 

P.S Mary, I know where you are coming from

[mayb]

Thanks mich I know you understand. Right now I am a wilting lettuce leaf - I think a nice cool shower and then I will also be a couch potato for a couple of hours too.

[Sharon]

Let`s all be couch potatoes.

I`m wilting away in this heat.

 

My hubby has just nipped to Asda to buy me scones and clotted cream......yum. I just fancied them. I don`t know where that craving came from, but I`ll enjoy it...

[mayb]

I tend to lose weight during the heat which is a bonus - I just live on salad, fruit, chocolate and icecream. I am tempted to 'diet' like this forever but I do know that it wouldn't be good for the bits of me not on the outside!!

[Sharon]

I find that I simply don`t want to eat when it`s too hot.

That`s why I was surprised at me fancying scones last night...........and very nice they were too!

 

I only seem to be putting wieght on these days though. It doesn`t matter how little I eat, or how much salad I eat, I`m just getting bigger and bigger.

[mayb]

I find drinking plenty of water helps to stop the sort of water retention bloatedness type of weight and also have a yakult every morning to keep things moving. I know with me when I feel bad then food is the answer so I started doing puzzles such as sudoku (spelling?) and other absorbing things to keep my mind off food. I lose weight when stressed and have had a very stressfull couple of years - hence lost 2 stone. My aim now is to keep it off as my wardrobe can't afford anymore changes.

[Michelle]

All this talk of food makes me want to head for the I try and distract myself from food by playing this darn game on facebook. It drives me nuts

 

As for today. Well, i'm still being a couch potato. I did joke with Andrew this morning via a text. He asked me if I was taking it easy. I replied,

'Yes!'

He then sent another text asking me what I was up to. I told him I was up on the roof tiling. To which he replied,

'While you're up there,dont forget to fix the ariel'.

Cheek! It took all my energy to get up on the roof in the first place

You have to laugh. In saying that, I had a cry in the garden last night. Felt so poo, and useless. You know those moments when it just gets a wee bit too much.

 

M x

[Christina]

Aww Michelle,

 

I know those moments all too well - when it all gets too much.

 

Chris x

[Hezza]

Yes sweetie I know those moments well - especially at the minute. For me they are an important release and I know it's natural to be up and down. Sometimes if I know I just need to cry I'll settle down with a DVD that I know will do the trick

 

This morning I found my "Bad Days" folder as I had been talking about it at the expert patient's session yesterday when we were discussing negative emotions. I settled myself down and read all the wonderful, positive and supportive messages I have had from people who believe in me and wish me well. It brought a few tears to my eyes but in a nice way and helped back into my more positive head.

 

Much

[Hezza]

Ps. When you're done with your roof can you pop down here and sort ours

[linds]

Hey Michelle, Are you any good with satillite dishes??? Ours needs adjusting. Ta Lindsxx PS Tmorro will do!