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.
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.
My husband's uncle, sister and niece had/have MS so when my daughter told me she thought she had sinusitis - although it was just that eye movement hurt - and I found out that optic neuritis is a symptom of MS, I thought before I tell her to make an appointment, I should ask for your advice on where to go. Should she see an eye doctor or a neurologist? She lives in London (South-east). I also no longer know how the health system works. Could she go straight to an MS expert of her choice - and if so, can anyone give me a name or two?? Any advice would be very very gratefully received?
Hi everyone I've just joined today...I've had MS symptoms for about 7 years..I think..my memory!! ..I had an MRI about 5 years ago which was inconclusive...I had VER which showed slowed responses and optic neuritis according to my doc...I have now ON in my other eye..but because for the last 4 years I've suffered from panic and anxiety disorder I can no longer go through with MRI's my neuro would like me to have..and I definitley do not feel able to have an LP..my question is...finally...do I stand any chance of ever getting diagnosed? the docs say they 'think' I have MS..but that doesn't help me.
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.