Still undiagnosed (not so good news) I have been seeking a diagnosis of MS since the late 80s on the NHS but so far haven't gone very far
I have finally been seen by the memory clinic, where the person who saw me didn't seem to have any obvious answers for me. I don't think these memory doctors like to stray far from their script. An example of this was the question 'Have you stopped doing things you loved to do?' and my answer was that I had. Had I been less confused, I might have elaborated a bit and added that the reason I no longer work with coding, building websites and running an online retail business, is that I have forgotten how to do all these things The doctor took the answer I gave her as a pointer that I was depressed!
She sent meon to a dementia neurologist who I got to see in early December last year (sort of indifferent news as he has now passed meon to somebody else). I read the letter the neurologist has sent to the next person and it includes their findings. The current diagnosis is of cognitive and memory issues that are most likely caused by a lifetime of untreated ADHD combined with a brain injury caused by a cardiac arrest and time spent in a coma in 2016.
So.. my issues continue and I still could have a long wait to move on to the next stage in my journey. I checked online for waiting times for an NHS diagnosis of ADHD for adults in East Sussex and the average time is about 5 years.
Hi Everyone
I first asked a GP about my symptoms back in the late 80s and he told me he suspected a central nervous system disorder after doing the usual neurological tests GPs can do. He referred me to a neurologist.
The neurology appointment and consultation arrived early 1991 and he repeated the same tests the GP had done then said he was all for sending me for further investigations. He then asked me to wait in his side room while he took a look at my medical notes in case he missed something.
After 10 minutes or so he told me that after reading my notes he had decided that since all my symptoms were most likely due to mental health issues (anxiety because I was mum to 2 children with special needs),he felt further investigations weren't needed. I would no doubt get the same response now as I am currently caring for my husband who is terminally ill.
In the 30+years since, all of those symptoms have got a lot more noticeable and others have been added.My current GP knows about the new symptoms but I'm still know nearer getting a diagnosis than I was 30 years ago.
I have had friends accuse me of malingering as I have no diagnosis (dumped friends now) and when I was in a coma following a cardiac arrest four years ago, hospital staff told my husband and my son on different occasions that they thought I was a hypochondriac. I can only assume that this is on my medical records as I hadn't talked to any staff at that point.
I am currently working from home as a writer and also run a bunch of on-line stores so it's not like I am just a lazy so and so.
I'm really posting to say that acceptance without fighting for a diagnosis has simplified my life so much and I am a much calmer and happier person for doing this.
It's my MS's official birthday.
8 years old today.
(Yes, I know it's a lot older.)
It's as good a reason as any for a drink at the Worcester Victorian Market this afternoon.
Paulx
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 mssociety@icmunlimited.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: helpline@mssociety.org.uk.
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.
