DLA sleep disorders

bambammy

Ebay - I know, I have toyed with this one so many times. Mainly because of my friends and family's point of view. Worried that certain people, making money from vunerable people. Saying not to spend any more.

It's not many from ebay, mostly Holland and Barrat. Couldn't find melatonin OTK.
I did research what I could on Dr.Sarah Myhill before paying for tests. She comes reccommended by ME/CFS support groups etc.
http://www.mecfs.co.uk/docs/Spring_2009_Webcast..doc
http://www.investinme.org/InfoCentre%20library.htm

There has also been disputes with the GMC. Despite this, ME/CFS and other related support groups, promote her findings.

GlasweJen wrote: »

*chokes* you buy them from ebay?!? I'm horrified, how do you even know what you're taking? Counterfeit medicines are rife online (including ebay) and can contain very little if any of the drug you're supposed to take, they can even look genuine and take specialist machines to tell the difference.

And as for Sarah Myhill, 5 minutes on her website and i can assure you she's a quack. Real doctors don't recommend regimes of vitamins and all sorts to "cure" without trying to diagnose the problem first.

magicstrawberry

I believe there is more you can do to maintain it better. I have the NHS telling me to take x4 200mg of provigil, and they keep the brain awake. The body is almost comatised when I stop taking the following advice. I strongly believe, ( although it is hard to put into place ) that if you follow Dr.Sarah Myhill’s advice you may possibly have some improvement. http://www.drmyhill.co.uk/cfs_book.pdf

Please look at your first sentence of this paragraph "I believe there is more you can do to maintain it better".

This is telling not suggesting as you didnt say something along the lines of " this is what ive used or did, here is the link just incase you may want to look and find anything useful"

But im sure due to the serverity of invasions condition it has crossed her mind anyway.

Please stop trying to constantly prove your condition is so serve and all the tests you have had.

We tried to help you but it has turned into a slanging match where we have now all been called vultures and that were guilt triping you

Please i hope you get some help for this and the best way to do that is to follow the advice we have all given you and if not then please stop posting all of this as its not proving your point but to me confirming how mixed up you are about your condition

JFKS

I dont like being refered to as a Vulture, I like many others have spent years coming to a diagnois of my condtion, and many times have been told its all in my mind . I have had numerous tests and some of them not very nice, but what I have always done is used the normal route like the NHS.

I think you need to get serious help with your state of health and mind, The whole world is not against you what we do not like is seeing vunerable people being ripped off by so called experts who in fact are only in it for thier own gain,

All I have told is where to get the advice and help you need with out it breaking the bank or lining the pockets of a quack.

I could give you a list of my tests and symptoms but thats not what you need what you need is help, Yes I like many other do have DLA but I can assure you I would rather be working full time, than feeling the way I do........

Maybe its time I found a Quack who would do me an internet Heart Transplant just off to google it now.

bambammy

TY JFKS. I woulnd't know where to begin with this one. I would truly love it some resolve. Is the London one the only one in the UK ? If so, do I have to keep changing doctors until I find one that will refer me ?

It's difficult finding a doctor who will consider other options.
Aprox year after being on 400mg of provigil. I discussed with the doctor removal of other underlying issues. Stating I believe if stomach issues are removed, this may aid better wake times. I asked if there were other options to rid my stomach problems. Could it be celiac, ulcers, could it be this, could it be that.

I was told, no, no and no. You're on provigil for life.

I recall approx 4yrs ago, when docotr told me my B12 levels were at
' 122 ' asking him, why after 16yrs of queries to energies and such like, did no doctor ever test for a B12 defiency.

He replied, it was not standard practice. Diabetes and underactive throid was.

I'm wondering if the doctors are concerned with Malpractice ? and there's maybe some doctor lingo on my notes to that effect ?
I don't know. I don't care about malpractice. I just want what everyone else who suffers these issues. Some resolve.

JFKS wrote: »

Can I make a suggestion that you get yourself refered to The Royal Neurolgical Hospital in Queens Square , London, Where they will test you for Mitrocondrial Diease and CFS, The test are not nice but might give you the answers as to what is wrong. What you should be having is a Open muscle biopsy, This will pick up weather the Mitrocondrial are working. When you get a confirmed diagnois The Team at Queens Square will help you get the needed benefit.

They will also run sleep studys to see what is exactly going on during sleep, If your Gp will not refer you change GP,

Yes I do know what I am talking about as I have Stage 4 Heart Failure caused Mitroconrdrial Myopathy, and with there help get both Mobility and care.

skipsmum

bambammy wrote: »

.

It's not many from ebay, mostly Holland and Barrat. Couldn't find melatonin OTK.

Melatonin is available on prescription from your GP if you are living in the UK.

JFKS

bambammy wrote: »

TY JFKS. I woulnd't know where to begin with this one. I would truly love it some resolve. Is the London one the only one in the UK ? If so, do I have to keep changing doctors until I find one that will refer me ?

.

http://www.uclh.nhs.uk/Our+hospitals/national+Hospital+for+Neurology+and+Neurosurgery

The Hospitals in London are the best in this country for problems, referals can be made by your GP or any other GP you have the right to have treatment wherever you want.

Ask your Doctor for a urgent referal if he wont refer you try a different one, as for what is written on your notes obtain a copy of them you are allowed to have your own copy and you can see what the Doctors have written and you can ask for correction, (yes I have done this)

If this fails make a private appointment to see one of the Mitrocondrial Team you can find them by looking up the Doctors on the above website, It will probally cost about £200 but thats is nothing to what you are paying on suplements, You may find if you write to the Mitrocondrial Team and send a copy of your notes they may agree to see you,

Please do not take any more herbal or other medicines until you have a firm diagnoisis and that will take time, as the mixture you are taking could be doing more harm than good.

bambammy

No actually, you, Magic Strawberry, to me you are now sounding quite immature!

' I believe ' - is not telling someone. It's an opinion from personal experience.

You see , M.S...i'm big enough to admit when i'm in the wrong. I can realise when I have taken something to personal or that i've maybe taken it the wrong way.

Therefore, I would like to end my take on this topic and thank all of those who gave advice. Even, if at the time, I didn't initially take it on board.

Magic Strawberry, i'll tell you what else I believe.....that you, JFKS and Invasion are cyber closely related :rolleyes:

Ta ta x

magicstrawberry wrote: »

Please look at your first sentence of this paragraph "I believe there is more you can do to maintain it better".

But im sure due to the serverity of invasions condition it has crossed her mind anyway.

This is telling not suggesting as you didnt say something along the lines of " this is what ive used or did, here is the link just incase you may want to look and find anything useful"

Please stop trying to constantly prove your condition is so serve and all the tests you have had.

bambammy

Thank you very much for this information.

JFKS wrote: »

http://www.uclh.nhs.uk/Our+hospitals/national+Hospital+for+Neurology+and+Neurosurgery

The Hospitals in London are the best in this country for problems, referals can be made by your GP or any other GP you have the right to have treatment wherever you want.

Ask your Doctor for a urgent referal if he wont refer you try a different one, as for what is written on your notes obtain a copy of them you are allowed to have your own copy and you can see what the Doctors have written and you can ask for correction, (yes I have done this)

If this fails make a private appointment to see one of the Mitrocondrial Team you can find them by looking up the Doctors on the above website, It will probally cost about £200 but thats is nothing to what you are paying on suplements, You may find if you write to the Mitrocondrial Team and send a copy of your notes they may agree to see you,

Please do not take any more herbal or other medicines until you have a firm diagnoisis and that will take time, as the mixture you are taking could be doing more harm than good.

JFKS

[QUOTE=bambammy;26962149
Magic Strawberry, i'll tell you what else I believe.....that you, JFKS and Invasion are cyber closely related :rolleyes:
[/QUOTE]

I can assure you I do not know either of the other posters, But I can tell you they are very true in what they are saying, I wish you all the luck and hope that your condtion is not as serious as what some of us are suffering because I would not wish this illness on anybody.

Invasion

bambammy wrote: »

Chronic fatigue, syndromes are symptoms of underlying issues!!! Those CFS symptoms I have are down to something other than my sleep disorder ! My mitochondrial function test affirms symptoms.

I experience all you described below and more. Minus the need for a wheelchair, because I maintain my illness better than you seem to be doing. I eat organic, elimate all toxins , use infrared sauna, CBT, don't eat wheat and other allergy foods, supplement on vitamins and exercise. If I don't do these things, I look like dead women walking and feel like a spare part for a horror movie and need to be bodily carried around, and when no-ones around, like you, i've had to use my hands,backside to get up and down stairs! Hence why we're moving to a cottage.

At no point have I said CFS symptoms are just being tired. I feel the same frustrations. But until people are educated, live with or experience a family member going through such like.

You said both, that you experienced all i described, and more, and you DID say that you used your hands and bum to get up the stairs....

Then you said

A few times you have puts words into my posts I didn’t say.

I never said or claimed that I used my hands/backside on those bad days…to get upstairs to bathe!!!!

How ridiculous, you can't get your story sraight, your overdosing on supplements that you buy from ebay, and then you're trying to tell me to do the same!! I may have "age" on my side, but I was undiagnosed for nearly a year, which puts my chances of full recovery down, and then given wrong advice for the first 3 months, which left me bedbound for 23+hours of the day, I've never got up to the level I was at before that. You say you don't have CFS, then you advise me on how to treat MY illness, which IS CFS/ME....

PROVIGIL is a prescription medicine used to improve wakefulness in adults who experience excessive sleepiness (ES) due to one of the following diagnosed sleep disorders: obstructive sleep apnea (OSA), shift work sleep disorder, also known as shift work disorder, or narcoleps

taken from the provigil website. Provigil keeps you awake, it deals with drowsiness, I am NOT drowsy, I'm not even tired, I'm utterly utterly exhausted, with a body that doesn't work, muscles that don't work, and agonising pain every second of every day. I "maintain" my illness fine! What I can't do is improve.

I'm not intolerant to anything, I don't have allergies, so cutting things out of my diet is of no use, it's not been recommended to me by any of my doctors, and you are not a doctor, much as you'd like to think you are.