No announcement yet.

I’m so terrified

  • Filter
  • Time
  • Show
Clear All
new posts

    Helen212 You can post wherever and whatever and even whenever you like. 👍😁🤗😍xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Ask your GP for Prozac or similar, it's really helped me.
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


        Helen212 anxiety about health issues is debilitating & exhausting. Echoing other posts really the best people to speak to are your medical professionals. Try to do the things you do to keep busy & things that distract your thoughts.
        Good luck. 👍
        Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


          Thank you

          I’ve got to try and keep busy, just so worried.


            Worry is a self harming emotion. If something is going to happen it will happen, and there's no point in worrying. Also an imagined ending may never happen so why worry. I hope this makes sense to you. 🤗🤗🤗🤗xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


              I’m scheduled 2nd EMG tmrw, private one again. Just don’t know what to do. Only had previous one a month ago.

              I think I’ll contact EMG Dr and ask him what to do. Is it safe enough to have 2 within a month?

              Many thanks and kind wishes to you all


                Helen212 I’m no medical expert but I can’t think of any reasons why you shouldn’t have two EMGs a month apart. All they’re doing is measuring conductivity at various points in your body. Why not just check with the EMG doctor before the test starts? There’s no need to worry about it today. Best wishes
                Diagnosed October 2020 - See my blog at


                  I had my nerve and muscle tests (with needles connected up to a pc) 3 months apart at the beginning of seeing my current neurologist. I’m still walking just about indoors with a walker nearly 4 years since first diagnosed. 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 all for replies.

                    I’m just so worried. Had blood test awaiting results.

                    Had EMG which was clear(5 weeks after twitching symptoms) I just don’t know something isn’t right at all. My tongue and speech getting worse. Yes I can do the tests of pushing tongue into my cheeks etc, but these tiny flickers that keep appearing all over me they don’t seem to fit what BFS sounds like on the forum I’ve looked at. I guess what I’m trying to say is that symptoms start somewhere don’t they.

                    Back in April I had an awful pain behind eyes and post nasal drip which lasted about 3 weeks. My voice was then nasal for about a month. I thought it was due to the medication I’d been out on. Now on reading more I wonder if this could have been an early symptom.

                    I’ve read that EMG’s can be done to early particularly with Bulbar onset.

                    My Gp sounds really concerned and that’s worrying me too.

                    I am sorry to keep bothering you all but other than a couple of close friends I’ve told no one. They seem to think I’d just have a test and all would be sorted.

                    I’m grateful to anyone who has read this

                    Thank you


                      One unique thing about MND/ASL is the amount and variety tests you have to endure. I think they do it so when you are finished and living with it, it's not as bad! 😉🤣😁😍xx
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


                        Dear Helen,

                        As the MND Connect team have discussed with you, having a second EMG may help to reassure you if it also come back clear.

                        Because your anxiety levels are so very high it may be worth speaking to your GP about medication to help calm you down, if only for a short time.

                        Your Neurologist is really the only person who can give you the reassurance or direction you need, so I would suggest that your speak to him about all your concerns.

                        I understand this is an awful time for you, perhaps talking to people who care about you, about how you are feeling, may help to lessen your anxiety.

                        Do you have any family you can confide in?

                        If you have no one who you can talk to perhaps your GP can refer you to talking therapies?

                        Because your symptoms do not definitely indicate Motor Neurone Disease, it would be more helpful to you to direct your questions towards your health professionals, as they will have more insight into the results of your medical tests.

                        With kind regards

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


                          It took a neuromuscular specialist 26 months to figure out that I had MND. Once I informed the Veterans Admin (US), they took another two years to confirm it. Diagnosis is a process of ruling out everything else, leaving ALS as the final possible diagnosis. MND has other conditions that you would be better off with, like PLS. The last straw in my diagnosis was a brain MRI that showed trouble in the corticospinal tract. I have had a total of 8 NCV/EMG's, and four blood/urine panels on top of basic blood tests for my PCP every 6 months.

                          Don't worry about a negative EMG early on. Lower motor neurons are sometimes hard to detect, and if the tech that did the EMG was not well versed, he could miss the neuromuscular junctions. That would result in a negative test. Happened to me twice. MND diagnosis is not a race, it is meant to be efficient because the diagnosis is a death sentence. Once you have the diagnosis, forget about life insurance (get it early and keep it paid up). The last thing anyone wants to hear is you have MND and there is no cure for it. But hey, it's also the last thing any medical professional wants to say also.

                          Take it all in stride. If you let it destroy your mental health, it won. Stay happy and live with joy in your life. Make a gratitude list and update it daily. Find others near you that have the same problems and share with them. Wisdom spreads through sharing. Get a dog (or cat) because they love unconditionally and with this mountain on our shoulders, love is a good thing to have.

                          But most important, find something to do that keeps you busy and your mind off your troubles. No matter what, the world is a beautiful place so enjoy it.


                            Thank you for your reply

                            I feel I know deep down. Having a break down due to medical issues quite probably linked to this and losing 3 stone in 3 months has taken it’s toll. I feel tremendous guilt towards my daughter.

                            I think the sinus pain and post nasal drip episode and nasal voice which lasted a month were the start of things.

                            my jaw continually clicks on the right hand side. These tiny flickers I watch on my legs aren’t like thumping twitches described in BFS sites which seem to be predominantly young sporty men under 30. They are all over. Stronger in jaw and torso. Like tiny tickles in calfs, feet and hands.

                            I can’t face anyone at the moment.

                            just trying to keep being mum to my daughter.

                            I appreciate your honesty and taking the time to reply.


                              I also believe that the EMG’s were too early after reading many similar cases.


                                Hi Helen,
                                So in my world Sunday is a day of rest. Can you try and timetable today so you get the most out of it.?
                                Maybe get out for a walk with your daughter?

                                Cant recall how old your daughter is but maybe invest an hour with her doing a new activity.

                                Listen to a meditation recording on you tube.Also try you tube talks on fear and worry.

                                Talk to family and friends.Invite somebody over to your place .

                                If you have a faith ..pray or read something spiritual .Watch on line mass or services.

                                Pamper yourself..paint nails, face pack etc.

                                Think about doing something to help somebody A small deed like popping in to see someone with a little gift can lift somebody’s mood.

                                Promise yourself for today more worrying ( as others have said on the forum it’s a wasted day to engage in worrying .)

                                listen to music .

                                I wish you a worry free day...helping somebody else even in some small way helps us to stop thinking about ourselves.

                                We can change our thoughts if we want to and try and be more positive.Try not to get stuck in health anxiety mode as this is the day we have been given so enjoy it with your daughter.

                                Off to watch Catholic mass on line then see my family later.It’s a must for me to get out for ride in wheelchair being outdoors.
                                I intend to enjoy this day and hope you do too.

                                Best wishes Helen