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on informing the DVLA of diagnosis and the potential impact on my earning ability if my driving licence were to be rescinded, I want to be absolutely sure that there is no doubt before I declare it officially.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.
Thought people might be interested in this link, received by me from the MS Register.
Personal Independence Payment (PIP) is the new disability benefit that is replacing Disability Living Allowance (DLA) and they want to know more about how it’s affecting people with MS. They are particularly looking at the new 20 metre criteria for mobility support which means fewer people are receiving the highest rate.
Take the survey http://go.newvistalive.com/start/?jn=P18373&dS=1
They want to hear experiences from anyone currently navigating the PIP process or who is still on DLA, no matter what stage you are at. It should take around 20 minutes to complete and your responses will help the MS Society campaign for change across the whole of the UK.
The survey is being run by ICM Unlimited on behalf of the MS Society. So, if you have any questions about the survey please email the ICM Unlimited Research Team at email@example.com.
Your feedback will be completely confidential, and individual responses will not be attributable or made available to the MS Society, unless you give your specific consent.
You might receive an invite to this survey again, if you’re a member of the UK MS Society Campaigns Community or Shift MS but you only need to complete it once. Your views and experiences will help the MS Society call for a welfare system that makes sense for people with MS.
If you feel you need advice or support relating to issues raised in this survey you can contact the MS Society helpline on: 0808 800 8000 or via email: firstname.lastname@example.org.
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?
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.
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