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    #46
    Sorry to be a bother again. I wondered if anyone would mind giving any info on a couple of things. I have received the patient copy of the letter sent to gp from neuro consultant. She says that upper limb reflexes now very brisk but lower limb slightly less brisk than before..... can this come and go like that with a type of mnd or is it usually the same or progressive? It also states bilateral hoffman's. I have looked at Google and I am feeling dense ! Is hoffman's reflex something yourselves had during the exam? Does hoffman's cause the clumsiness and dropping things? I am not very knowledgeable sorry. A lot online is very scientific and not plain English. I couldn't ask neuro consultant cos she didn't mention that during appointment and only read it afterwards. Again had unilateral babinski sign. Her diagnosis says probable pls and the referral to a mnd specialist which I have received appointment for this autumn. During a second opinion what usually happens does the consultant repeat neurological examination again or anything further? I wondered if a specialist looks for anything different? I apologise for coming here again....not knowing is just playing on my mind so much. Some days I can completely switch off and others it's constant trying to read up on medical things in my letters and researching everything....is this familiar?!! Thank u for listening. I wish u all well. Best wishes Zante .

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      #47
      I have Babinski sign, brisk reflexes, high tone of what is left, which is not much.

      It would be interesting to see if you have any gene defects, my DCTN1 is knackered. The neuros diagnosed PLS in me after they thought that it was PPMS. It turned into ALS but these are just names to describe rare diseases.

      Ask for a gene test but if it is any consolation, I was in your position in 2008.
      Copyright Graham

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        #48
        Thank you Graham for your reply. Sounds similar beginning with yourself to me then. She said I have normal tone in arms but increased tone in lower limbs , brisk reflexes upper and lower limbs, positive babinski one side, hoffman's both sides and spasticity legs. She did rule out ppms. Also said she initially queried hsp. Now written probably pls. Just got to wait to see second opinion neuro specialist. Is a gene test something that is done on the NHS? I have no family history of any neurological diseases at all. So from 2008 for yourself until now it somehow changed to als? Did they do regular emg tests cos that's been mentioned to me? Thanks Graham.

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          #49
          Dear Zante,
          I can understand how confusing all these medical terms must seem.
          Both the Hoffman’s reflex and the Babinski reflex are standard neurological exams which can indicate to the Neurologist the possibility of a nervous system disorder.

          Unilateral as in Unilateral Babinski signs suggest just one side of the body, a positive Babinski reflex would also indicate upper motor neurone damage. The Neurologist will test the lower extremities to determine the result of the Babinski reflex.
          A positive Bilateral Hoffman's reflex suggests damage on both sides of the body to the upper motor neurones. The Neurologist will look at the upper extremities to determine the result of this reflex.
          Symptoms of both, can include clumsiness and difficulty with daily activities and walking. So a positive test would explain why you experience clumsiness and you have begun to drop things.
          During the second opinion consultation, the Neurologist will examine the test results, if he feels there is not enough evidence in the results he may refer you for a second set of tests. However, there may be conclusive evidence in the original test results, enough for a diagnosis.
          If the second opinion supports your Neurologists opinion of Primary Lateral Sclerosis, PLS, please do contact the helpline team, MND Connect, we can advise you on what support there is available to you, provide written literature for you and also answer any questions you may have. The helpline number is 0808 802 6262.
          If you have any further questions, please do not hesitate to contact us.
          With kind regards
          Jacqui Anderson
          Senior MND Connect Adviser

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

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            #50
            Jacqui thank you for replying and being so thorough. You have explained a lot thank you. I wasn't understanding Google much! The hoffman's wasn't there during first exam in June and is now and explains why now I am dropping a lot and being clumsy and picking things up off a table etc seems to be difficult. With walking I am so unbalanced quite a lot and my right foot doesn't feel right and scuffs often along the floor. It's the right side that has the babinski positive reflex.
            I am frustrated with myself as I feel I might have caused this because I have been a long distance runner for a really long time. After seeing articles on the news about exercise links with mnd I wonder if it is a reason for this going on now. I don't know. Many thanks for the support and explanations. I will see the second opinion consultant not far off. Thank u.

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              #51
              Zante I think it’s important that you know what the term “Probable PLS” means and what it doesn’t mean.

              Probable PLS is a diagnosis in itself which means a person has had upper motor neuron symptoms for a period of 2-4 years, little or no lower motor neuron symptoms and not attributable to any other neurological condition.

              It is not simply saying or guessing that you “probably” have PLS.

              Probable PLS becomes “Definite PLS” after 4 years of the above criteria. So, you could be in for a long diagnostic ride and, distressing though that is, you weren’t told it’s “Definite ALS”…

              I know that a doctor suggested you don’t take an antispasmodic but, if your rigid muscle tone is preventing you from doing things or causing pain, then there’s no reason to shun meds that would let your arms or legs actually bend! With careful monitoring, you can find the sweet spot for the dose.

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

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                #52
                Ellie thank you. I did actually think probable pls meant probably! Sorry. Misunderstood it. I know she said she has ruled out other disorders that have upper motor neuron signs. Including ms. Only she queried hsp but said that it bilateral and my babinski is unilateral. So yes I assume then that I am gonna be in for the long journey of diagnosis. But as u say not als and she definitely said it's not that because I asked her. Of which obviously I am relieved beyond words. Sorry because am sure pls would be a relief to patients with als instead. I am going to ask about the medication for my legs when I see the mnd consultant. I might raise the subject of genetics tests if that's advised but don't want to bombard him with too many questions. Thanks ever so much. Am guessing there isn't anything for balance issues?! Xx

                Comment


                  #53
                  Originally posted by Zante View Post
                  Am guessing there isn't anything for balance issues?!
                  Only horrid things like canes and walking frames 😪

                  But, now that you've brought it up... Zante, falling is not good for you and is to be avoided at all costs 😏 To make matters worse, our arms don't automatically get the message to 'break the fall', so we can just find ourselves on the floor.

                  If your balance is poor and falling is likely, you really ought to use some form of walking aid - could you access an OT (Occupational Therapist) or Physiotherapist? IDK if a foot orthotic would help with, for example, lifting your foot better - not directly balance related but we can fall over for no apparent reason sometimes...
                  ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                  Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                  Comment


                    #54
                    Dear Zante,

                    I agree with Ellie, you should be referred onto an Occupational Therapist (OT) who can advise on walking aids for you as well as other aids around the home. The OT can also refer onto orthotics if that is appropriate.
                    Your GP can refer you, or you can self refer for Occupational Therapy services by calling your local Social Services Adult Care Team.
                    With kind regards
                    Jacqui
                    Senior MND Connect Adviser
                    MND Connect
                    Contact us on 0808 802 6262 or at [email protected]

                    Comment


                      #55
                      Thanks Jacqui and Ellie. Walking I can do unaided without problems too much. It's becoming unbalanced mainly when moving or turning direction that catches me so have learnt go slow! On uneven ground it can be more tricky. Stones sticking up causes falls cos I feel at the time my foot is over it but then it catches the tuft of grass or stone etc and trips me up and I can't seem to then stop myself. My legs aren't weak as in can't walk but are stiff and rigid feeling particularly down hills. Only 5 falls tnis year but no serious injuries happened. I can see it coming pride is going to be the sticking point with walking aids. Might manage a walking pole like a trekking pole !! The orthotics do they keep the foot higher then? I am gonna have a look online to see how it works because can't picture it. Thank you as always for the information and tips and advice. I would like to help others in times to come like you have with me. Thank u. Still trying to get my head around it all and nervous about the second opinion appointment. U know when you want something to come and are waiting for it but at the same time you don't want it to arrive because its real then. Take care and thank you. And Ellie u r right I have noticed hands dont react quick enough when heading towards the floor. It's like a delayed too late response. Xx

                      Comment


                        #56
                        Originally posted by Zante View Post
                        The orthotics do they keep the foot higher then?
                        They can help in several ways, or not at all, that's why you'd need a professional assessment, but they can lift up a foot, support and stabilise an ankle or support and stabilise the lower leg and knee.

                        And yes, using a stick can seriously damage one's pride, but not as much as a cracked skull on a pavement. Sorry if I seem melodramatic but it has happened...

                        Remember to breathe and be kind to yourself 🤗🤗
                        ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                        Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                        Comment


                          #57
                          Thanks Ellie. I did lose my balance last year and hit the ground hard and broke a few bones but don't recall what made me fall. I did contemplate then getting a trekking pole but backed out in the end. You are right damaged pride better choice than damaged head!! The orthotics I will mention during my next appointment. Thank you as always.xx

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                            #58
                            I too have no family history of MND.

                            You might want to rule out PSP too Zante.

                            They are doing all the tests that they did with me back in 2008 but the only prospect of an actual effective treatment is in finding the genetic problem. Even sporadic MND has genetic origin.
                            Copyright Graham

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                              #59
                              I have three walking sticks, two Zimmer frames and a manual wheelchair. I can still walk unaided. 😉🤗😀😍xx
                              Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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                                #60
                                Matthew it's great to see your sense of humour!! Unaided with.... I must be flying now then!!!

                                Graham psp has never been mentioned to me only mnd. But i did have a read up as haven't heard of it so thanks for information. She did say my cranial nerves and functions was all in tact. I don't have any problems swallowing. With speech my family and myself have noticed I am struggling sometimes to get my words right and long words can be slightly difficult to say but this only started a few weeks ago and I have no clue what it means or if this happens with pls. My eyes are totally fine and had mri brain and entire spine and neck which was all totally normal. I have noticed my neck muscles strength really isn't very good at all. I don't know how this is happening when pls is supposed to normally begin in one limb and very slowly progress to upper body which worries me that both my hands and arms and legs are effected which doesn't sound the usual way. How on earth do people cope with just waiting and watching and hoping for things to stop changing and progressing. Just got to wait for next appointment. Thank you. Xx

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