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    Looking For Advice / Reassurance

    Hi All, I’m new here but have red some previous messages from older threads which have contained some great sensible advice.

    I’m a 36 year old male and to explain my current situation…. I have just gone through a really stressful time with my young sons health which started in October and we thankfully are now coming to the end of. This involved a lot of doctors trips, tests abs scans as well as phone calls to book appointments and chase information. I should also add that I do occasionally suffer with stress and anxiety and I have had a couple of flare ups throughout the past 5 months with what has been happening with my son.

    Just as things have started looking better with my son and I should be breathing a huge sigh of relief, about 3 weeks ago, I noticed a strange sensation on the bottom of my feet. It wasn’t numbness or pins and needles but they were sensitive and a bit tender. I had bloods to rule out diabetes and all was fine.

    since then I now have developed more of a very stiff right leg and reduced feeling in the top of my right foot (it feels tight). I had a massage on the leg and the person doing it said that leg was very tight but I didn’t get much relief in terms of the leg being more loose. My leg just feels different.

    I don’t have any noticeable weakness but my ankle does feel weaker and all I notice that I can’t do is spread my toes on my right foot which I can on my left. I don’t even know if I could spread them previously but that’s my dominant side so I expect I could, not sure?

    I also have muscle twitches but they are in different places like both legs and arms and I think I am a bit hyper sensitive to feelings at present as I’m worried.

    I saw the GP and have a referall to a neurologist in a couple of weeks. This seems the logical next step but I wanted to seek some advice and hopefully more so reassurance if anyone can offer any? I’m of course worried about MND as I have a young family but a big part of me thinks stress / anxiety may be playing it’s part.

    Thank you




    #2
    Sorry to hear you are having worries, but we are really not qualified to offer diagnostic advice here - we must leave it to the medical professionals.
    MND presents differently in different people, and I was passed round various specialists in a diagnostic process that took 6 months.
    You say you have been referred to a neurologist, and they are probably best placed to give you some answers.
    We are praying it is not MND, and we hope you find some treatment for your anxiety.
    If it is - we will be here for you.
    Hi, I'm Eddie.
    Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
    Still walking and talking, and wondering what the future will bring.

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      #3
      Agree with Wheels of Steel it really has to be a neurologist who delivers the diagnosis. Some symptoms of MND can be similar to other stuff and they have to eliminate that other stuff before diagnosing MND. I had to have an mri scan ct scan and blood tests. Plus MND works in different ways for different people. Unfortunately there is no test that says you have MND.

      Hope it works out ok for you.

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        #4
        I hope you get the answers you need. I'm not a qualified neurologist so can't comment on your particular condition, however you might find reading about Functional Neurological Disorder (neurosymptoms.org) could offer some reassuring alternatives?
        Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

        Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!

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          #5
          Best wishes mate take everything slowly

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            #6
            Hi all, thanks for your responses and just wanted to update. I saw a neurologist who performed a standard neurological examination and was happy that all seemed normal. He said no tests were necessary and felt I was perfectly healthy but said if I wanted tests they could be arranged. Of course this was reassuring to hear but then the anxiety kicks in and I go down the “what if he missed something road”. I said I would hold of tests for now and see how I go for a period as surely you have to be able to trust an experienced consultant neurologist right? Just sometimes difficult to accept that stress / anxiety can cause such strong and strange feeling physical symptoms.

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              #7
              I think you have to trust that a consultant who has undergone years of training and has years of experience probably does know what s/he is talking about and won’t have missed something out. As you say, stress and anxiety can do terrible things the mind and body. Best wishes
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                #8
                Thanks Peter

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                  #9
                  Hi guys, I’m going back to my neuro tomorrow as my keg is still not feeling quite right, I am still getting the muscle twitches all over and I’ve noticed I seem to get pins abs needles really easily in my hands in particular and sometimes my feet. Lots of people talk about failing rather than feeling in regard to weakness. Is it true that a a limb or part of a limb just stops or would it be more likely to slow down and feel tired / weak prior to this? There is so much conflicting information so I was keen to get done clarification on that part in particular, thank you

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                    #10
                    Daz,

                    Please try not to stress yourself over MND, most of the symptoms you describe are more likely to be stress related than anything else (and you getting stressed is in all likelihood making the symptoms worse not better).
                    Your neurologist will be the best person to explain to you whether you are experiencing clinical weakness and to test you for this. Even if you do have a clinical weakness this could still be down to a whole host of things not just MND.
                    MND is a very rare disease please try not to worry.

                    James
                    Foxes Never Quit 💙

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                      #11
                      Hi, thank you for your message. I did go back and see my neuro who has ordered a brain MRI which I’ve had (no results yet) and and EMG which is in a couple of weeks time. The EMG in particular is something I am keen to get done and I have seen the sticky that mentions it being the “gold standard” test” that is available which is great.

                      Since I last posted my symptoms have continued and my right leg, particularly the sole of my foot and ankle are deteriorating in my eyes. It’s almost like the padding or flesh on the bottom of my right foot isn’t there (it is there) and so it feels almost bruised when walking and my right (dominant leg) just doesn’t have the same ooomph and power in it as my left leg anymore. My twitches also continue mainly in my legs although I do notice them occasionally in my arms too.

                      I am getting upset and emotional a lot more recently and I just feel something isn’t right and I am worried more as time goes on. This has been progressing for 7-8 weeks now and it is really affecting me.

                      I can walk on my toes and heels, squeeze things and lift things as normal. I have walked 2 golf courses in the past 2 days but this was a much harder process for me than it would normally be.

                      I keep trying to reassure myself that if anything major was wrong I wouldn’t be able to do this, but I’m not sure if that’s even true?

                      I’ll keep the thread updated asap. Thanks again for your time guys.

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                        #12
                        Daz A The brain MRI, I was told, is done to rule out a brain tumour. Think you would’ve have heard very promptly if they’d found something. Good that you’re having the EMG. Until then I’d suggest try to be positive about what you can do. I wish I could walk around two golf courses! I’ll also add that I’ve not had the problem you describe with your feet. Have you asked your GP for help with anxiety?
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                          #13
                          Hi Peter, I’ve been speaking to a councillor but I think a clean EMG would help my anxiety a lot to be honest. I’ll wait for the results of that and then speak to my GP again. Are you’re EMG results given on the day after the test? Yes you are right, the MRI is to flag up any issues like that or MS. My neuro doesn’t suspect t anything which is a good start . The tests I’m having are being done to reassure me is what he’s said.

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                            #14
                            Originally posted by Daz A View Post
                            Are you’re EMG results given on the day after the test?
                            The specialist who did my EMG said nothing on the day and I understand they have to interpret the results and summarise in a report. I emailed my NHS neurologists secretary after I’d had my tests (EMG was first) and she arranged for me to be soon as an ‘overbooked’ patient at the end of the neurologist’s list about five days later. (It’s always good to have a good relationship with a secretary!). I don’t think you can ask to be an overbooked patient, but it might be offered.

                            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                            Comment


                            • GPs hardly ever come across MND in their career the condition is so rare.

                              It is important not to obsess about it and relax. Worry can cause conditions itself.

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