The MS Trust makes excellent information films. They've recently released one about the way enquiries for information are handled to ensure all contacts are shown the paths and choices before them.
See here:
Tip: subscribe to the MS Trust YouTube channel while watching this one!
I recently visited the MS Trust offices and met the people in this film. They could not be more approachable, caring, kind nor could they have their hands on more information. Phone them when you need to
MS Trust
Providing information you can trust, supporting the MS specialists you need
Talk to us about MS - 0800 032 38 39
Hi everyone,
Some of you may remember me but it's been a long time since i've posted here, I thought some of the limbo landers might be interested to hear that after several years of various tests & specialists i've been diagnosed with Ehlers Danlos syndrome - something i'd not even heard of until recently.
When i read the symptoms, they fitted exactly, yet this was something I had never concidered. I have had a Lumbar Puncture & MRi, so my symptoms fooled the neuro & rheumy, not just me. This is one of the best links I have found which really show how symptoms could be confused with MS http://inthefringes.wordpress.com/eds/
The reason i had such a bad time with my Lumbar Puncture was probably down to dura ectasia & that spinal anathesic is often uneffective in people with EDS.
It can also cause impaired proprioception & vision problems. My 'drop foot' is actually extreme hypermobility, causing my ankle to be very unstable and floppy & the numbness & tingling is caused by my joints spending alot of their time slightly dislocated or mis-aligned which means they press on nerves & blood supply. At night my shoulders actually drop to the lowest possibly point which is why i waked up not able to feel my arms.
My joints have always clicked & cracked as a move, if anyone else has this symptoms its definately worth looking into. I was told by doctors that it was due to air bubbles in the joints but it is actually due to my joints subluxing (partially dislocating).
The bad news is that it has also effected my heart, i'm waiting for another MRI. It's also genetic so I'm having to arrange for my two children to be tested.
I'd like to say thank you to everyone who really helped me when I was terrified I had MS & was going through tests & hope this info can be of some help to someone. It does make you realise it is important to keep an open mind whilst in Limbo.
Take care
Panda x
MS Trust directed me to this survey. It struck me as being quite a well put together survey. If you have a DX of MS then you might like to help them out by filling it in.
Interestingly it didn't asked what type of MS I have.
Regards,
John
as i understand it all the pct money will go the doctors surgery and decissions will be made there about your drugs etc. - they will be responsible solely for your care - i do worry about this as there are a lot of msers who find it difficult to get their feelings across, especially when gps are unbelieving. i think money will be short and things like baclofen instead of a more suitable expensive drugs will be pushed. - i think in general we do not come over well in a surgery and i also think that there are many patients who are very lucky to have that special something with a doctor and get anything -
i think that the unknown face of the pct is a more fairer way - though at this moment i cannot work out who will decide who will foot the bill for the ferons and up and coming drugs.
i hope the consultant still does the first yes for required expensive treatment. -
also we will be given the opportunity to join what ever surgery we want - sounds good untill you move house and all the good practices are full with people from miles away
and you have to make a longer journey.
thats too much thinking for one day
i did hear that maybe doctors will join together for decission making or many pct workers will work for the doctors - great more money out of the doctors budget!!!
Founded in 2004, MS People UK is a community website and discussion forum by and for people with Multiple Sclerosis as well as for friends, families, supporters and those interested in this disabling condition.
If you’re newly diagnosed or want to ask about possible first symptoms, or if you’ve had Relapse Remit, Secondary or Primary Progressive MS for some time, a welcoming group of fellow MS sufferers is here to chat with you about MS symptoms, diagnosis and treatments.
The atmosphere is friendly whilst being compassionate, supportive and caring. Members also post about a variety of subjects not related to MS, as well as share jokes, talk about their hobbies, have fun, and more.
The MS People Forum is not responsible for advice or information supplied by members. We suggest you seek medical advice before trying anything.
