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Thread: Terrified

  1. #1


    I am currently going through testing for mnd. I originally saw a neurologist in October. He seemed quite dismissive and almost chuckled at my list of symptoms but agreed to do a few tests to keep me quiet I think. Since then I have had an mri which was clear and a nerve conduction study which showed up carpal tunnel.
    I presented back to my doctors this week in years and explained that my right arm is getting progressively weaker and the muscular fasciliations are constant. He examined me and was obviously concerned and said there is muscle wasting in my wrist, hand and arm and an obvious weakness that certainly wouldnít be caused by carpal tunnel. He rang the neurologist who then rang me and offered me an appointment for this coming Monday.
    Iím so so scared. I know nothing has been confirmed yet but I know in my heart that it is mnd. My uncle had this dreadful disease and I have spent many hours desperately trying to prove to myself that it cannot be.
    Iím trying to step away from google and distract myself. Itís so hard to do because every movement is difficult, every fascilation drives me to distraction and every symptom is a constant reminder.
    Iím so terrified. I canít sleep or function.
    I have eight children. Four are four and under and two have disabilities. My youngest is only 6 months old and Iím struggling to hold him? There is so much for me to consider.
    Basically I needed to speak to someone who would understand this fear and who has been through this.
    I canít believe how fast a small amount of arm weakness has become the struggle to move my arm in only four months.
    I was desperately hoping something would show on the mri to explain the symptoms. I was hoping for ms lesions or anything just to make sure it wasnít this!!
    Iím 39 years old.
    Iím sorry for blurting all of this out but I needed somewhere to get this out of my head. I know everyone is going through their own battle on here and I hope I havenít added to anyoneís stress loads. I just needed somewhere to cry. Thank you.........

  2. #2
    I meant to add I was diagnosed with benign muscular fascinations three years ago and an essential tremor.
    But the fascinations are more focused and intense now and the arm weakness is a completely new symptom. But it is severe....

  3. #3
    Forum Member
    Join Date
    May 2018
    Of course you are terrified, and not just for yourself. But if your fears are realised (and they may not be - diagnosis works by excluding all other possibilities and some of these are rare) you will find help and support here. You have to get through till Monday for everyone's sake. Have you anything, even over-the-counter, that will help you sleep? I know sleeplessness makes everything worse, physically and mentally. The hard thing to bear for now is uncertainty, but that leaves some room for hope. By Monday you may be closer to answers but don't be surprised if you still have to wait.
    I hope your mind is set at rest quickly but try not to torment yourself till you know.

  4. #4
    Thank you for replying. I have been given propranolol 40mg x 3 a day to try and take the edge off. Itís definitely helping a bit but Iím still pretty emotional.
    Iím sorry to throw it at you all but I figured youíd all understand what Iím going through. My gp said they would have ruled out a lot of things by doing the mri and blood work but he thought theyíd probably order an urgent emg and more bloods. Apparently the urgent emg can take up to six weeks. Itís such a scary time.
    I did get a whole one hour and 11 minutes sleep last night in the end. Haha.
    Itís just constant waves of grief because I donít want to leave my babies. Plus Iím pretty terrified too. Not a great combination eh. But thank you again. Monday feels a million miles away right now. Xxxx

  5. #5
    Forum Member Lynne K's Avatar
    Join Date
    Nov 2017
    Hi 'belle, I'm sorry about your stress and problems sleeping. This isn't good for a young mum with a 6 month old and 3 others under school age. Even your older 4 may be a challenge that a sleep deprived mum would struggle with. I'm talking here as a mum of 4 and an ex child minder (many years ago) . Also any symptoms that you have are likely to be worse if you're exhausted.

    So, I'd try to set your worry aside for now. Do something nice to relax yourself. If you have any family members who could look after your children that'd be helpful so that you could get some much needed sleep.

    We can all relate to your pre diagnosis worry. I hope that when you see your neurologist on Monday you will afterwards be more at peace, whatever the outcome.

    About you offloading on here. That's no problem at all. We all have done it occasionally. This is a very friendly, unjudgemental forum. We will all try to either answer your questions, offer suggestions and/or sign post helpful others or websites.

    I hope to hear from you after your Monday appointment. Hugs, Lynne.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #6
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Kelly.

    Sorry to hear about your symptoms.

    How is your manual dexterity - opening buttons, plaiting hair etc?

    Does your wrist/arm/hand hurt if lifting a pan or child etc?

    Best wishes for Monday.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  7. #7
    Thank you Lynne. That means a lot to me. I certainly feel like I need a hug right now.
    Monday seems so far away but then in another way Iím desperate for it not to be here. I know I wonít really get any answers until after the emg. Just such a horrid situation. I want to spend every waking minute with the children but then Iím constantly trying not to burst in to tears when Iím with them. You are all such incredibly brave people. The fact you have taken time to try and comfort me is so kind. Thank you. Xxxx

  8. #8
    Hello Ellie,
    I feel slow if that makes sense. Iím having to hold my phone in my left hand and type which is not natural for me.
    It feels heavy in my right hand and my fingers feel stiff, tired and just slow.
    Iím not particularly in pain when I lift. But afterwards I feel a bit crampy. They just feel a bit sore. Like my tendons hurt. My fingers and hand also get a burning crampy type feeling. But my arms are shaky when I lift them up high in front of my face. The muscles feel tired and a bit crampy. Itís hard to explain. Itís not sensations Iíve ever really had before.
    They feel tired and strained maybe?
    My left leg slightly burns, feels Ďtightí and stiff.
    Thank you for the best wishes. I will of course update on here.
    Just need to get through the weekend now. Xxxx

  9. #9
    Forum Member
    Join Date
    May 2018
    Hi Kittybelle,

    I am so sorry for your symptoms and that you feel so scared and anxious. Waiting to see consultants or waiting for the results of tests is so stressful and it is hard to think of anything else.

    I really hope there is another explanation for your hand weakness .MND is diagnosed by ruling out other possibilities so it is a very stressful process. Even after I had been diagnosed I was referred for a second opinion and was advised to have all the tests repeated after six months to check if they had missed anything. I found that time especially hard as I kept googling alternatives.

    I know it is much easier said than done but please try to rest and do something to help you relax. Everything is harder when we are exhausted,

    Please dont worry about having a moan on here ! We all help and support each other and it's the right place for emotional and practical support. All best wishes for your appointment on Monday.

    Love and hugs,

  10. #10
    Forum Member
    Join Date
    Jan 2020
    Hi kittybelle, I have only just read your feed, just wanted to say I'm thinking of you today x

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