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    Help needed


    I would be grateful of your opinions here on what I been experiencing over the last few weeks.

    Currently I am having the following symptoms:

    My left leg feels like it is permanently ‘buzzing’- it keeps me awake at night, non stop movement. (for just over a week now)
    I have got/had muscle twitches in both calves, both feet and both hands, above and below knee- vast majority of twitches have been in left calf. (first noticed about a month ago).
    Stiffness on lower right arm.
    Right shoulder appears to be shaking, especially after doing something with arms.
    Aches in thighs, soreness in shins and behind knees, especially after doing any physical activity.
    Some numbness in little and ring fingers in both hands, intermittently.
    Some weakness in left hand- struggle to chop things up and writing badly.
    Fatigue (although this could be due to the lack of sleep recently).
    Poor co-ordination (again could be due to lack of sleep/fatigue).
    Lost quite a bit of weight (although could be stress)
    Feels ‘spongy’ when I walk.
    When I have been driving, it feels like I really have to force the power to the pedals.

    This began about 6 weeks ago when I thought i’d pulled the muscles behind the knees which just didn’t seem to get better, which then led on to the twitching and now the buzzing. I also felt extremely tired after walking, even when not particularly exerting myself.

    I would be grateful of your thoughts here.

    Kind regards
    Last edited by Edinburgh21; 14 June 2021, 14:32.

    The MND connect team will reply, but i expect they will say the same as me. You need to see a doctor, and if they do not come up with anything, ask for a referral. MND is diagnosed by removing all other possibilities, it cannot be directly diagnosed unless, perhaps you get a specific genetic blood test. This can't be one you buy yourself as they would need to look at specific genes; a neurologist can do this.
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.


      I agree with Evelyn. It’d be best for you to make a face to face appointment with your GP. Good luck, Lynne
      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.


        Hello Edinburgh 21, I assume its the same for you in Scotland but you can now demand a "Face to Face" with a doctor - no more having to use the phone, start the ball rolling as diagnosis can be a long way off and can be more than a couple of years.....

        Best wishes
        Husband Albert diagnosed PMA Feb 21


          Hi Edinburgh 21. Yes if not already done so kick things off by by go seeing gp as first port of call. Good luck.


            Hello Edinburgh 21

            I'm sorry to hear that you are concerned about your symptoms. Some of the symptoms that you describe are not typical symptoms of motor neurone disease (MND). No one on the forum is qualified to give opinions on your symptoms and we would always suggest that anyone with any symptoms that they are concerned about, need to contact their GP.

            If it would help to talk through your symptoms then please do give us a call on 0808 802 6262 Monday-Friday 9am-5pm.

            Best Wishes

            MND Connect Adviser
            MND Connect
            Contact us on 0808 802 6262 or at [email protected]


              Thank you for your kind replies and apologies for not replying sooner.

              Got an appointment with neurology in 2 weeks.

              In the meantime since my last posting, I have been having some frankly alarming symptoms:

              Permanent tremor/fibrillation in legs, trunk, arms and shoulders.

              Aches, cramps and pains in arms, legs and joints, these seem to come and go but especially occur even after only minor exertions such as cooking and a short walk. Sometimes it feels like my muscles are in a vice! Also some sweating too after doing minor tasks.

              Feel like my left calf muscle does not work at all now (not sure how to confirm this).

              Clicking joints every time I move.

              Weakness (unsure if ‘clinical’ or not)

              Some weight loss.

              Sleep apnea- I wake every morning in the early hours and when I doze it’s like i’m hallucinating (lack of oxygen?) i’m worried if my diaphragm is working correctly now. Would it have any impact on bowel, stomach and bladder as well as breathing? How can you tell if your diaphragm is working ok?

              I would appreciate any further thoughts, my symptoms seem to be progressing very quickly and I am very worried- could it be respiratory onset?

              I am scared to go to sleep at the moment!

              Many thanks
              Last edited by Edinburgh21; 4 July 2021, 11:02.


              • You could ask for a whole genome gene test.


                  Hi Edinburgh21
                  You really need to speak to your GP about your concerns. The symptoms that you describe are not typical MND symptoms.

                  Best Wishes

                  MND Connect Adviser
                  MND Connect
                  Contact us on 0808 802 6262 or at [email protected]


                  • A full gene test will also give your susceptibility to other diseases too, most notably cancer. The lid on the full range of 'nasties' is currently being compiled. It is part of the UK's Personal Medication Plan.


                      Always best to go with the medical specialists that deal with these issues. Self-diagnosis does nothing but drive one up the wall of stress, and it is a very high wall. This is a list of ALS mimic's that are most common. In reality, fear is a big motivator when an individual begins to get symptoms like this, yet, it is that fear that magnifies the condition because you become ultra-sensitive to those symptoms.

                      Just relax because you are doing the right thing. You will see the Neurologist, he will set up a plan to diagnose what is going on with you. He is trained to diagnose many different causes of those symptoms you have. Trust him :-). Then verify what he tells you by getting a second opinion from a different specialist.


                        Originally posted by Johnny5 View Post
                        You will see the Neurologist, he will set up a plan to diagnose what is going on with you. He is trained to diagnose many different causes of those symptoms you have. Trust him :-).
                        😲😲 Erm, hello... Believe it or not, not all Neurologists are male.

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


                          Originally posted by Ellie View Post
                          😲😲 Erm, hello... Believe it or not, not all Neurologists are male.
                          No doubt. Expediency got me. The only one I have come to trust is a male. Sry.


                            We are a friendly, helpful and supportive group, but we are not medically trained and we are not doctors. 👍🤗xx
                            Last edited by matthew55; 12 July 2021, 04:05. Reason: It's a bit early
                            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                              The ‘buzzing’ is what frightens me the most, it’s all over the breathing and back area and I already having to have several pillows to prop me up- not that i’m sleeping anyway. I have the CO2 headaches but the docs and A&E will only test O2 and peak flow.