From onset to diagnosis?

[Cruisegurl]

Hi Dot
Yes I was diagnosed in May this year but symptoms appeared 5 years ago. Started with pain under my left heel, stiff and sore calves when walking. Then limping and twitches. Fell in 2015 started using crutches. Started using a wheelchair full time last year and had deterioration in my left hand. 2017 my right leg followed suit so could no longer stand. Was initially told I'd got slipped discs, trapped nerves, had had a Myelitis or some kind of event but told to go away and do physio??? Then treated for a neuropathy with ivig which when not appearing to work was sent to Sheffield for an opinion. Bingo! EMG and MRI- Diagnosis a rare variant of PMA. What a rollercoaster ride for me and my family. Still not had any visit from an OT or Physio?

Best of luck to you
Jo

[Iron Will]

I started to limp and get leg cramps late 2016. had a vertebra MRI xmas 16 they thought I had a "worn" disc in my spine. then had a brain scan early 2017. that was clear. They then looked at my prostrate and found a lump, that was removed and was benign. was given ivig , a waste of time. finally diagnosed 3 weeks ago. got my first meeting with the specialist team today.

[Dott]

Thank you all very much! I too have problems, I hope not MND kind, for 4 years. All test for now are clean and no dissability, only atrophy (not confirmed by neurologists). This poll means much to me, as well to others searching for answers and suffering for years in limbo land.

[MEJ]

My husband was very lucky. He went to the doctor, having lost significant strength in his arms over a 3 month period. The doctor sent him straight to a neurology consultant who he saw a week later. Following tests to preclude anything else his diagnosis was confirmed a month later. Although totally unexpected by us and a shock to the system, we realise that we were spared a great deal of trudging round hospitals.
I would be interested to know why some people have to undergo such a tortuous route to diagnosis. Apart from anything it is such a waste of precious time.

[Lynne K]

I went to a neurologist first time in late 2016 or early 2017. I had been losing my ballance for about 2 or 3 years, and had a bit of weakness in my thumb and first 2 fingers on my right hand. I was asked about any back trouble. I have had disc problems since my first slipped disc at age 24 and lots of times severe pain and difficulty moving since then. When I told him this he obviously thought my stiff inflexible legs was due to my back condition. No response to my slight slurring in speach or my right hand issue. He sent me for an MRI on my back. It came back with what I expected: severely degenerated discs. He had discharged me but I didn't realise and waited about 10 months for another appointment. When one didn't come I went back to my GP who looked annoyed and referred me again. So approximately 2 months later I got an appointment with a different neurologist. He sent me for a head MRI and that was the thing that confirmed the diagnosis that the 2nd neurologist had been reluctant to say. The rest you can guess. Lynne

[maggie]

HI Marigold have you been in touch with the motor Neurone Association .They should give you all the information

[Marigold]

Bingo!!
Helpful neurologist physio and things tumbling into space...
Equipment arriving, assessments booked and even a podiatrist arranged. Amazing to see what can happen when you find the right person.
Was planning on contacting MSDA next but progress has been made now.

Thanks Maggie and all for advice though!
Marigold

[Marigold]

sorry - predictive text... neuro physio
M

[Dott]

Please, if you are answering the poll, please write something about it...it is much more helpful to know about the jurney than just see numbers.
Since I’m suffering for 4 years now (almost 4 years) I would like to know what were the problems those of you who had long jurney to diagnosis experienced! Please be so kind and write something!

Thank you!

[Cruisegurl]

Hi Dott,

5 years from start of symptoms to diagnosis
May - July 2013- stiff calves and painful left heel on holiday
Jan 2014 - by now limping weak in L foot and ankle twitching in left leg. Saw GP referred to Podiatry and physio.
Nov 2014 - weakness creeping up left leg. Twitchy and feeling heavy. Referred to Neuro Surgeon for possible back issues.
May 2015 - couldn't drive anymore with no strength in clutch foot. GP still not referring to neurologist even after EMG suggesting issues high up? Told to keep up with physio and lose weight!
June 2015 - first fall Iin the street. Went onto crutches to be able to walk.
September 2015 - total hysterectomy. Told weakness in left leg could be due to a lumbarsacral plexopathy?
Jan 2016- New GP not sure what to do as still progression of weakness and fatigue left side.
May 2016 - self funded appointment to.Neurologist. confirmed no trapped nerves no herniated disc issues no lumbosacral plexopathy. Thought it was in my blood? Antibody causing conduction block. Admitted to hospital for tests
June 2016 - LP, emg ncs, CT, blood panel. Started on immunoglobulin therapy. Still on crutches at this time but left hand now hurting and feeling stiff.
Felt some benefit from the infusions but queried the frequency of them as I was getting 6 weekly pulses but was feeling tired again and twitchy after 3-4 weeks. Consultant wouldn't offer more frequent infusions.
Early 2017 using wheelchair alot more and inside the house.
Referred me to Sheffield Iin August 2017 for an opinion on whether I had a peripheral inflammatory issue or a peripheral degenerative issue?
December 2017- saw the eminent Prof McDermott for a face to face examination. He ordered emg test and MRI.
May 2018 - met with Prof and he told me I had a very slow variant of MND? A lower motor neuron issue and said it is PMA. I have both legs too weak to stand and my left hand is very weak but can still use it to do most things unless it's fine fiddly things like put my earrings in or fastening a bracelet.
I struggle to turn over in bed now and general strength is not as good but still eating and drinking ok. Good appetite and reasonably good spirits on the whole.