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Thread: Hello

  1. #1
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    Hello

    Hi, I've been lurking for a little while so thought I'd take the pludge, say hello, introduce myself and seek advice from all your valuable experience of MND diagnosis.

    I'm a 44 year old full time working mum. I've not had a diagnosis of MND (obviously hoping I never will) but am currently awaiting an appointment with a neurologist for assessment.

    My problems started last July when I noticed that I was starting to catch my foot when walking which had caused me to trip up a few times. I've had back pain on and off for a number of years (always managable) and just assumed it was linked to that. I went to see my GP who sent me to see a fab physio who I think realised quite quickly that something wasn't right and arranged for an MRI. The MRI showed a disc prolapse with probable nerve impingement so I was referred on to see a spinal specialist.

    I saw the specialist in December who talked me through my MRI results but said he didn't think my symptoms were a result of the disc prolaspse because my symptoms are on the left and my probable impingement is on the right hand side. He sent me EMG and nerve conduction tests. I had these in January, nerve conduction tests were fine but the EMG showed a 30% reduction in strength in my left foot/ankle. Following these results he ordered additional thoracic and cervical MRI and also a brain MRI. All came back as normal.

    I saw the spine consultant again in Feb when he said he was at a loss to explain the weakness in my left foot/ankle, but was sure it not connect to my back and he was referring me on to see a neurologist.

    Since end of Feb I've started to develop pain and weakness in my left arm, my grip I think feels okay but I can't lift anything with the arm/pull open doors etc and my foot/ankle weakness I think feels pretty much the same but I am still tripping. I've also developed twitching in my arms and legs, most on the left side but very occasionally in other areas of my body.

    Current waiting time for a neurology appointment in our area is 18 weeks. From your experiences is there anything else I should be doing/chasing up in the meantime?

    Sorry for the long post and many thanks for your help :-)

  2. #2
    Forum Member Ellie's Avatar
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    Hi Lottie,

    I'm sorry you're going through a diagnosis process. Did a Dr mention MND?

    Do you know your EMG results? An EMG measures muscle response or electrical activity in response to a nerve's stimulation of the muscle, not strength, so maybe the EMG report might give you some idea of what’s going on?

    I hope you are due to see a neuromuscular neurologist? Yes, it’s hard to wait between appts

    Wishing you all the best.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  3. #3
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    Lottie, sorry to hear you are young, I am 69 and month after 65 was formally diagnosed with ALS MND. I a bit like you few years before had tripped a few times and I had pain my left hip and assumed it was to long playing rugby in the front row. I had kept myself fit walking my dog. I was also typing and left hand did not want to type and I fully trained typist as my mum trained me as kid. I was getting cramps as well down the left side. I now cannot walk and talk. I was fitted with leg clamp and it worked well for couple of years.
    You will find out anything you need to know from this site.
    Best wishes John

  4. #4
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    Quote Originally Posted by Ellie View Post
    Hi Lottie,

    I'm sorry you're going through a diagnosis process. Did a Dr mention MND?

    Do you know your EMG results? An EMG measures muscle response or electrical activity in response to a nerve's stimulation of the muscle, not strength, so maybe the EMG report might give you some idea of what’s going on?

    I hope you are due to see a neuromuscular neurologist? Yes, it’s hard to wait between appts

    Wishing you all the best.

    Love Ellie.
    Hi Ellie, thank you for your kind message. No, no one has mentioned MND, it’s mostly me putting two and two together and getting five! I don’t have my EMG results, only know what the doctor told me when he was doing them. I think strength maybe my interpretation of what he meant. He said there was a 30% difference on the left side which is where my weakness is. I do work around people with musculoskeletal problems so am aware my symptoms aren’t characteristic of something with a simple musculoskeletal diagnosis. I know from reading though that lots of things can mimic the symptoms of MND so quite likely it’s something else but equally I guess I’m trying to prepare myself and gather as much ch information as possible so I’m informed when I do finally get to see the neurologist. The wait is frustrating though ��

  5. #5
    Forum Member Terry's Avatar
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    Hi Lottie and welcome to the forum;

    Waiting for a appointment and tests are so frustrating, you could see one privately and still go to the NHS but it's not cheep.

    I'm sure you've been told that it could be a number of other things.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
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    Thank you for your kind wishes.

  7. #7
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    Good luck Lottie. I like you researched a lot whilst waiting for a diagnosis. I was aware MND could be a cause but was hoping that it wasn't. After 5 yrs going downhill regarding my ballance and eventually stiff legs I got the dreaded MND diagnosis about 5 months ago. My research had somewhat prepared me. My right foot tripped me up lots before the diagnosis but I had undergone peronial nerve decompression a few years earlier and it could have been this nerve trapped again causing my foot drop. But I have other symptoms so it's turned out that it's mnd after all. I have been told that I have a slow form of the disease. It's the best I could have been told since the first mention of mnd. I hope Lottie that you don't have to wait very much longer to get to the bottom of the cause of your symptoms. The waiting is horrid I know. Take care. Lynne

  8. #8
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    Welcome Lottie

    I hope you get a different diagnosis. 18 weeks is such a long time to wait to see a doctor, it must be very nerve-racking for you, and frustrating.

    You will find a lot of support, and knowledge on this forum.

    Wishing you the very best.

    CCxox
    .

  9. #9
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    HI lottie
    I started similar to your symptoms just after my 50th birthday. My NHS Neurological appointment was also 18 weeks away so I went Private and got the bombshell diagnosis of Probable MND. I contacted my NHS Neuro department and asked for a cancellation, they offered me an appointment at a hospital in a different area, I jumped at it as I wanted a second opinion.
    After 8 months of tests and treatments I was diagnosed with MND.
    Time is of the essence, keep pushing for an earlier appointment. You are young and a Mom, please make a nuisance of yourself to get heard.
    Since my diagnosis in August 2017 I am now wheelchair bound and can now only move my hands, its really tiring just to write this.
    I pray its not MND but act quickly.
    Love Darling D xxo

  10. #10
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    Hi Ellie

    My husband went through exactly the same process firstly they thought he had sciatica which we had scans and scans and saw a spinal specialist who did not think his that his foot weakness was due to his back problems and referred him to a neurologist, The appointment was a standard 15 weeks or more even though we chased so we decided to go private at 200 and we had an appointment within 2 days and all the following treatment through the nhs. He had drop foot and was diagnosed with MND. He also had the twitches in his arms legs and stomach , Such a blow when confirmed as he had just retired but out MND team and this site has been marvellous . I hope you get your appointment soon and think positive always x

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