So a 2nd opinion has confirmed dx of RRMS some 18 months after the original dx. I'm still having trouble accepting it but admit I finally have to. Events and stress have exacerbated symptoms over the past few months and whilst I'm still not 100% convinced, it does seem more than coincidental that I should be feeling so unwell at possibly the worst time in my life.
I feel as though I've ground to a halt both physically and mentally right now. Have said goodbye to a job I recently started because I just can't make it into the office. Living on painkillers and alcohol, not a good combo I know, but helps me at the moment and to hell with the consequences.
I keep reading about the importance of looking after one's mental health and how it can affect / be affected by MS, but there seems very little support from an MS team point of view, ie there is no MH professional as part of the team. Has anyone else found this? It's all very well focussing on the physical aspects of MS and treatments, but not much good if the psychological side is ignored and ends up killing you first.
Probably should give the MS nurse a call but I don't want to be told it's another pseudo-relapse and made to feel as though I'm wasting her time. There's nothing they can do about it anyway. I feel very alone with this.
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.
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