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  • Diamond123
    replied
    Thanks Hayls. That has been my experience too, some very good doctors and some not so much. I have had to push the NHS for absolutely everything e.g medication, physio, referral to a specialist....this in itself is exhausting.

    I've had a fair few melt downs I can tell you. This being in limbo is really awful.

    The fact I have just deteriorated since first going to GP in Feb 2019 makes me think that I won't ever get better. Whatever I have, it seems to be life changing.

    I have absolutely no control over what is happening to me so I have to try my best to be positive. The anti depressants have really helped.

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  • Hayls
    replied
    Oh Diamond, wow, your amazing for all that you’ve done, only you know how your feeling, Me and my Family have had our own battles with medical professionals and unfortunately not all of them are knowledgeable as they believe but there are so exceptional professionals out there and you keep shouting from the roof tops till you are given the support you need to live and protect your family and I hope they give you answers so you can live your life the best you can, fingers crossed

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  • Ellie
    replied
    Don't let them forget about doing a muscle biopsy - it could provide vital clues.

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  • Diamond123
    replied
    Thanks Ellie.

    No not had a muscle biopsy (yet) although this was mentioned by my neurologist. I had an MRI on my thigh muscles a few weeks ago, apparently this might show something. It's all a mystery 🤔

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  • Ellie
    replied
    Did you have a muscle biopsy in your investigations??

    Best of luck getting to the crux of your myopathy and happy for you that it's not ALS/MND.

    Love Ellie.

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  • Diamond123
    replied
    For those of you kind enough to respond to my original post a few months ago, I thought I would update you.

    I had a brain MRI in July which came back normal.

    I had another EMG in Sept and this showed myopathy in the left thoracic paraspinal muscles as well as excess motor units in left deloid and bicep. No evidence of nerve involvement as far as I understand.

    At my request, I was referred to Prof Shaw in Sheffield and she wants me to go into hospital for a day of tests in the new year. She said she doesn't think it's MND due to there not being any nerve involvement and the timescales don't fit with MND (first symptoms noticed Sept 2018).

    Regardless of this, I continue to deteriorate albeit very slowly. I have been off work since May and bit by bit my old life is slipping away. I struggle to walk very far and can no longer take my children out without help. This has been a year of utter hell not just for me but my family too. I started on an anti depressants in August which have helped me deal with what is happening. I have a head up collar on order and am hoping this helps with my weak neck. I am also on baclofen to help with muscle stiffness in my back although can't say that I've noticed much difference.

    I'm really hoping to get some answers in the coming year.

    Happy New Year to everyone and here's hoping for good things in 2020.

    X

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  • Diamond123
    replied
    The head drop is caused by a problem with my neck and has always been there. The neurologist I saw in March thought my head drop was caused by dystonia. Muscles mis behaving and pulling my head forwards. I went with this and had the recommended Botox treatment. There was absolutely no benefit but it certainly didn't make the problem worse. Given my other symptoms and the fact Botox didn't work, I started to question if I really do have dystonia hence seeking a second opinion. I have read that head drop can be an early presenting feature in MND although it is rare.

    Everyday my neck seems worse but this is only half the problem. The muscles in my upper body are so tight when I am standing or walking around making doing everyday things really difficult. My limbs and joints ache. My muscles twitch.... blah blah blah....I feel like a broken record. I just want someone to tell me what's wrong with me.

    It's a very lonely experience when nobody can know exactly how I'm feeling and it's really scary how very slowly my body seems to be giving up on me and why this is happening I do not know! I'm sure other people must have experienced this.

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  • Ellie
    replied
    Diamond, to rewind - you were diagnosed with dystonia in March, had Botox (in your neck because that's where the dystonia was??) and then developed head droop?

    Love Ellie.

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  • Diamond123
    replied
    That's reassuring then. Thanks. X

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  • Ellie
    replied
    Just re EMG: it doesn't matter that your neck muscles weren't tested. Neuronal damage would be widespread and would be very apparent on the EMG.

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  • Diamond123
    replied
    I just had the EMG not NCS. My neck muscles were not tested with the EMG. The closest needle was on my shoulder. I actually saw a different neurologist in March and he thought I had dystonia so I had some Botox injected into my neck. The botox made no difference and given my other symptoms, I wanted a second opinion hence the recent tests. Botox can stay in the body for 3 months so it's possible this could have affected the EMG result.

    I am now waiting for the neurologist to call me. As far as he is concerned all tests have come back ok and hes happy nothing is wrong. I know something is wrong with me and I need to know what the next steps are to a diagnosis.

    I am really struggling doing basic things at home and looking after the kids is starting to get difficult. I feel like my body is fighting against me and I just need some answers. I'm not very patient at the best of times but this is really testing me!!

    Appreciate your advice. X

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  • Ellie
    replied
    It's really important to have an MRI which will check for spinal compressions etc. and I am very surprised one wasn't done, given your symptoms. Did you have nerve conduction studies (NCS) as well as an EMG?

    You would not have had a clean EMG if your weak neck was due to ALS/MND - by the time a person with ALS has head droop, a huge proportion of motor neurons would be destroyed and the EMG would be highly abnormal.

    Again, you're not describing MND symptoms. What's the next step with your neurologist?

    Love Ellie.

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  • Diamond123
    replied
    Thankyou for your response and advice Ellie. I think it's strange the neurologist hasn't recommended an MRI. I will definitely ask him about this. I was referred to NHS neurology too but waiting time was 5 months! I am going to chase this. There has never been the suggestion that this is anything other than a neurological issue.

    I appreciate my symptoms are somewhat unusual, but after doing some extensive online research (dangerous, I know) I really can't see anything else that fits my symptoms. It's the combination of head drop, muscle twitching and weight loss that is concerning me most.


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  • Ellie
    replied
    Hi Diamond,

    Your symptoms sound nothing like MND symptoms - I can't really see where the possibility of it being an MND came from.

    I hope you soon find out what is causing your symptoms and, if you haven't already had an MRI, that would be an important diagnostic test to have.

    Given you're seeing a private neurologist, you can always change to a new one if you don't feel you're getting answers. Did your GP refer you to an NHS neurologist too (even if there's a waiting list!) and did the GP focus solely on it being a neurological issue?

    Best wishes with your health,

    Love Ellie.

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  • Diamond123
    replied
    Thankyou so much for taking the time to read and comment.

    I think I need to keep badgering my neurologist. I have paid privately for these tests so all the more frustrating I have no definitive answers.

    My boys are just 2 and 6 and I cannot bear the thought of what a diagnosis of MND would mean for them.

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