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.
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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
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Despite years of attacks, multiple symptoms, MRI of brain showing lesions coming and going and involvement of the corpus callosum, I still cant get a diagnosis of MS from my neurologist - or a diagnosis of any kind! Needless to say I'm pretty frustrated. Do patients in the UK have similar problems obtaining a diagnosis? I live in a very isolated part of Ontario, Canada hundreds of miles away from a 'second opinion' so when a patient has only one neurologist serving a huge area, well....Any comment will be greatly appreciated. Thank you.
I've written a detailed letter to Neurologist today, asking if he can definitely confirm the dx of RRMS. I don't know why, but I just don't/can't accept that I have MS.
The first Neuro I saw was always very vague and non-committal, 'MS' was never actually mentioned. I always felt as though my symptoms were trivial and I was wasting his time. The way his letters were worded were also vague; 'ongoing tendency to inflammation or inflammatory problems in the CNS'.
Second Neuro conducted more tests and was a little more specific, but only one letter actually mentions MS, the others refer to 'two probable attacks in two years'. Doesn't exactly fill you with confidence does it...!
In the 'What is MS' booklet, it states that 'MS damages nerves in different parts of your brain and spinal cord. Where this damage is, will affect which parts of the body gets symptoms'. So, a Neurologist should be able to accurately confirm whether what symptoms a person is experiencing is down to MS or not (sure it's not that simple, but seems logical to me).
I have spoken to an MS Nurse briefly about this, and she has tried to reassure me that a Neuro wouldn't diagnose MS if they weren't sure; but given the persistent badgering on informing the DVLA of diagnosis and the potential impact on my earning ability if my driving licence were to be rescinded, I want to be absolutely sure that there is no doubt before I declare it officially.
Has anyone else felt like this? I really hope I'm not the only one to have serious doubts about their diagnosis.
My fiancée is 25 years old and has always been fit and healthy. In August 2017 he suffered from bladder retention, which resulted in a trip to the hospital to get a catheter fitted. Over the next few days his legs became increasingly weak to the point of having a bad fall on the way to his GP and having to return to hospital where he has remained since.
His first MRI scan showed lesions in the CNS leading to an MS diagnosis and a course of steroids. Despite the high dose of steroids, he continued to get worse and each MRI he received showed multiple new lesions. Within 2 weeks of his admission to hospital he had lost all movement in his legs and arms, lost all bowel and bladder function, began to lose his eyesight and was transferred to the High Dependency Unit and put on oxygen as his breathing had deteriorated.
After multiple failed treatment attempts he began to receive Cyclophosphamide and 5 months on we are seeing very slow improvements. We have had mixed opinions regarding diagnosis, some say it is a very rare, aggressive variant of MS and others say their gut feeling says it is something else. Either way everyone who has seen him has agreed they have never seen a case like it.
Research on the subject is limited, so if there is anyone who has had a similar experience with aggressive MS, or anyone with any knowledge or advice, we would appreciate anything you can tell us.
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.
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