Unclear changing Diagnosis 15+ years


I’m new here and wanted to make a post as I’m interested in whether anyone here has had an experience similar to mine.
I would be grateful for any advice offered.

When I had just turned 16 (2006) I had my first set of noticeable symptoms.
Although when I was 10 I had an investigation into an underactive thyroid due to dizziness and fatigue, which, looking back may have been my first presenting symptoms however the tests never showed anything.

At 16 my symptoms started as a burning sensation in my left leg which was painful when sitting on the cold toilet seat, muscle pains, aches and dead/heavy legs, leg weakness in my right leg with my knee and ankle giving way leading to falls. Dizziness and spinning vision (unable to stand), headaches, flashing lights, fatigue and tiredness, speech problems and probles with word slurring, forming words, and finishing sentences. (to name most of the symptoms)

I went to my local GP who got a second opinion at that appointment and asked me to come back the following morning for a third opinion.
I was sent straight to the local hospital.

I was admitted to the assessment unit for a week, whilst I had various blood tests, an MRi scan and a failed attempt at a lumbar puncture.

These tests eventually came back. The MRI showed legions on both my spine and brain, this along with my symptoms, provided a diagnosis for relapsing and remitting MS.

I was assigned a specialist nurse who supported me in applying for the correct benefit and putting me in contact with services provided to support people with MS.

I eventually left education after finishing year 11 and doing 1 year of 6th form - which I eventually dropped out of in my second year, as I wasn’t able to keep up with the work demanded of me.

I went into childcare - a job I loved, but wasn’t easy for me with my health.
I managed 3 years in my first nursery setting with management who were less than supportive and eventually was pressured into quitting through their bullying.
They didn’t take my MS diagnosis seriously due to my age and I was too young to realise I should have made a formal complaint.

After this job I went into passenger transport working as a school escort on minibuses.
The job role was taking children with disabilities and special needs to and from school. It suited me much better due to the lessened work load, as I was in receipt of DLA I was able to live on the wages provided with working less hours.
I stayed in this job role for 10 years until 2020.

I was on and off steroids and pain medication for years until around 2010 when my nurse wanted me to consider starting medication - Rebif.

I was referred to see Dr Malik at Charring Cross hospital for a second opinion regarding my diagnosis due to the age at which I was diagnosed.

This lead to further tests, bloods, MRI a successful lumbar puncture and tests to look ay my vision (optic nerve I believe) and another involving an electric current being passed through my body whilst monitored (not sure the names of the last 2 tests).

The MRI still showed the legions, my optic nerve had evidence of damage and the lumbar puncture results were p-ANCA positive, this caused my diagnosis to be changed from MS to ANCA vasculitis.

My doctor, already a specialist, worked along side a team of people to try and provide an accurate diagnosis.
At this point he didn’t want to waste any more time attempting to accurately diagnose me and placed me on Methotrexate and Folic Acid weekly.

I took this for many years which helped to supress most of my symptoms, however I never went back to feeling fully normal within myself - mood, energy levels etc

I was taken off of methotrexate at the end of 2019, and subsequently discharged from Dr Malik as my health seemed to be stable.
My discharge letter shows my condition to be now listed as ANCA Associated Relapsing Myelitis rather than ANCA Vasculitis.

Shortly after, I was contacted and required to change my DLA payment over to PIP.

This claim was denied and I was forced into leaving the job I’d been comfortably in for 10 years, taking a new job role which would cover my cost of living.

Since then I have bounced around from job to job as I’ve found it incredibly difficult to find a job role which suits me and my health, allowing me to be consistent.

I am currently working in a private day nursery and have been for there for around 5 months.

My health has been slowly declining with some presenting symptoms earlier in the year causing me to have time signed off by the Dr - Bad back and low mood/depression.

Since the start of December I have had a progression of symptoms starting with shortness of breath, cold like symptoms, dizziness, headaches, visual disturbances, confusion, brain fog, bad back, altered sensation in my right thigh and fatigue.

These caused me to be admitted into hospital - where the Drs seemed to be trying to diagnose me all over again. I’ve had blood tests, MRI, a failed attempt at a lumbar puncture.

This week I had my follow up with their neurologist who informed me he was quite sure it wasn’t vasculitis, as vasculitis presenting in the CNS would have deteriorated quickly after being taken off the methotrexate.

He said MS was likely but he didn’t want to say for sure and offered to refer me to St Georges hospital for further investigation.

I am already awaiting an appointment for Charring Cross to be seen by Dr Malik so informed the Dr and he said he would pass his notes to London for that appointment.

In the mean time I’ve been off of work since the middle of Jan with no support for my current employer and have even put forward some concerns relating to treatment from my current manager not keeping to the DDA - but that’s a whole different story.

I guess my question is has anybody been through such a lengthy diagnostic procedure - mine started as I turned 16 and is still being investigated now I am 34 with no clear answers.

The other thing I am struggling with is because I don’t have a definitive diagnosis of MS - only ANCA Associated Relapsing Myelitis, which I recently learned to be a blanket term for any condition resulting in the inflammation of the spinal cord, how do I go about getting support and more importantly if there is any support out there for somebody in my situation.

I would be really interested in any insight, thoughts, similar experiences, advice or support you could share as this is an incredibly stressful and scary time going back to a possible diagnosis of MS after being told it wasn’t.

Thanks so much for reading!

Hi Chloe

Misdiagnoses do occur, especially when there can be a lot of overlap of symptoms between conditions. Once you have been given a name for something it will stick until it becomes very obvious that there is something else going on that doesn’t tally. On the otherhand occasionally you can come across a consultant who seems to do a lot of rediagnosing people, based on their current hobby horse (aka bias), and MS seems to be one of those conditions that some neurologists want to disprove, and later on the diagnosis gets reinstated.

I hope you feel a bit reassured that your current team are trying to diagnose you again, and not just accepting previous diagnoses, and will hopefully get it right this time. The neurologist who has referred you on to St Georges MS team has done the right thing - seeking expert opinion, especially as there have been some changes / controversy over your diagnosis in the past.

I’ve still not got a diagnosis for what I’ve been experiencing for over 40 years. Just a ‘it is definitely neurological, but we can’t put a name to it.’ 10% of neurological cases do not get a named diagnosis.