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Advice / reassurance about symptoms

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    Advice / reassurance about symptoms

    Hello everybody,
    I hope no one minds me asking for some input. Fairly long story, but I will try to keep it short.
    In November I felt perfectly 'normal', got up on 4th November and had an attack of vertigo and fell over. Hospital did a ct of Brain which was normal and I was sent home saying it was a virus. A week later I started to get really bad pins and needles in one foot, started twitching all over, vibrating internally, still had vertigo and felt horrendous. Then got patches of numbness on arms and my whole left side felt weird .Back to A&E where all functions/ blood tests were normal aside from vitamin D which was extremely low. I was treated by my GP for this. The twitching has become intermittent, but is there most days and is sometimes awful at night. My whole body feels like it pops all over.My side still felt wrong and then I started to get a crawling sensation on the back of my thigh, burning in my hip and all down the side of my left thigh. It was so bad I could put any clothes on it. It's very painful .Back to GP who ordered MRI of head and lumbar region , all normal. I still have all the symptoms down my left side, but now I feel like I can't walk properly as my legs feel like lead/ jelly. They don't feel like they are mine if that makes sense.It feels like all the strength has gone out of them, although I can still stand. My left arm feels heavy too. I can no longer go out independently and have been referred to a neurologist.
    As MS has been ruled out, does this sound like MND to anyone? I know generally sensory nerves aren't affected, but reading some of the stories on this site that's not always the case.
    I'd be grateful for any input. Thank you. X

    Hi Carrie,

    Sorry you have all those symptoms but they don't sound like MND symptoms at all.

    Hopefully the Neurologist will quickly get to the root of your issue.

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      Thank you so much for finding the time to reply to me, I live alone and don't have anyone / any family to share my concerns with so I really appreciate your response.I've just got myself into a very negative mindset, mainly because of the twitching.
      Sending you all love, what an amazing resource you have built. X


        Hi Carrie, I agree with Ellie. Your symptoms sound very worrying but not like MND, I hope that the Neurologist that you see will find out what’s happening soon. I’m sorry that you are alone. I’m no specialist so this is just a suggestion: if you can’t get out because of mobility problems ask your GP to refer you to your local services for walking aids and ideally the local wheelchair services, Maybe get some counselling too. Not having somebody to share your concerns with must make you feel alone and vulnerable. Take care, Lynne x
        ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

        I'm staying positive and taking each day as it comes.


          Thank you for your kind suggestions Lynne, I will take your advice.
          It's very hard being alone with all that's going on. My main concern is really the muscle twitching and heavy legs as I'm frightened this could point to MND, but then I have all the other symptoms too. I don't think I have clinical weakness, but I'm not really sure how that would manifest. I guess being isolated is making me overly anxious...
          You are genuinely so kind to respond, I appreciate you taking the time. X


            Hi currie and welcome to the forum,

            Whilst some of your symptoms do occur with Mnd, it just doesn't start like that.

            Vitamin deficiencies and stress can cause many problems.

            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.


              Hi Terry,
              I know you are right, certainly about the stress. I suppose the problem for me is that I have no knowledge of how MND does actually start and have therefore jumped to conclusions/ catastrophised.
              Thank you for taking the time to reply to me. X


                Hi Carrie and a warm welcome to the forum from me. In the nicest possible way I hope you are a temporary visitor on here and that you get some answers to explain your symptoms soon.

                Waiting to see consultants and for the results of tests is so stressful so I hope you have not a long wait to see a neurologist. It must be extra hard if you live on your own and have noone to share your worries.

                Take care of yourself,
                Love Debbie x


                  Thank you for your reply Debbie,
                  I'm afraid I've got myself into a bit of a state as I've just read that another member has been diagnosed solely on the basis of twitching. My twitching is all over and visible. I have however just today had a neurological exam ( unrelated to this matter ) and all my strength tests were fine. Am I worrying unnecessarily, given the other members diagnosis ? I'm so sorry to burden you all with my worries. Thank you. X


                    Originally posted by Carrie View Post
                    I've just read that another member has been diagnosed solely on the basis of twitching.
                    Carrie, I can assure you that nobody is diagnosed with ALS solely on the basis of twitching, no matter what you read.

                    You should be reassured that you have been examined by a Neurologist and you have no clinical weakness - great news!!

                    Love Ellie.
                    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                      Dear Ellie,
                      Thank you for your further reassurances. I'm in awe of you all offering support . Thank you.
                      Love Carrie xx


                        Having seen a neurologist today regarding my symptoms I feel a little calmer although still obviously don’t have a diagnosis.
                        I do have to have nerve conduction tests and although I am not thinking I have MND I do still have all over fasciculations. Can I ask if anyone knows how these tests know which fasciculations are due to MND or due to other causes. Is there a way that you could be diagnosed wrongly with MND because of fasciculations?
                        I appreciate this may sound like a naive question and I in no way intend to offend anyone. Thank you


                          Hi Carrie,

                          Fasiculations in muscles are created by all sorts of reasons, not the least in my experience when I am fatigued from exercise and muscles then shake and throb like nobody's business!

                          There are other causes including having too much caffeine (I know that one) and the effects of other drugs.

                          And as Ellie has said above, MND never shows fasiculation without muscle weakness


                          ​Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 90% left arm and 90% right arm, plus other bits including both shoulders and also some breathing issues – Campaign contact Winchester and Southampton branch, and trustee of the Association

                          "Things turn out the best for people who make the best of the way things turn out"


                            Hi Carrie,

                            I’m glad you’re somewhat calmer following your appointment - what did the Neurologist say?

                            I presume you’re having an EMG test as well as an NCS? (An NCS detects a problem with the nerve, whereas an EMG detects whether the muscle is working properly in response to the nerve's stimulus)

                            To answer your questions and assuming you’ll have an EMG:

                            The test picks up any abnormalities and yes, the Neurophysiologist can determine if the results are suggestive of a motor neuron disease.

                            A diagnosis of ALS/MND is not given lightly - there are criteria to be met before it’s given. So, whilst nobody is infallible, it’s highly unlikely for someone to be incorrectly diagnosed with an MND and much more likely that someone is left without a diagnosis while further investigations are carried out to determine what is actually going on.

                            When is the appointment?

                            All the best.

                            Love Ellie.
                            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


                              Hello everybody,
                              I just thought I would update you all , out of respect and gratitude for the help you offered in what was a difficult time for me.
                              After many scans etc I had NCS and EMG. These showed 3 different herniated discs in my back and a trapped spinal nerve, all of which account for my walking difficulty.
                              I was also referred to an ENT specialist who diagnosed me with Vestibular Migraine, which accounts for balance/ dizziness issues etc.
                              My twitching was due to a combination of low B12 and Vitamin D.
                              Thank you all so much for offering support despite your own very difficult situations, I really am truly grateful. X