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    EvelynMW
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  • EvelynMW
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    Shepster34
    Forum Member
    Shepster34 Just read through all this thread. I take sertraline and have been on it for several years. Had to change from my previous anti-depressant, escitalopram (?) as started to give side effects after a year or 2. All of these drugs take time to work, usually at least 3 weeks, but can be longer. I have suffered from depression since I was 8, and have taken pills, on and off, since i turned 20 something (can't recall). Finally, after my last (and worst) period, decided to stay on them forever. Now, i feel normal all of the time; being diagnosed with MND has made no difference to my moods. I can only trust that you will find something that works for you, sooner, rather than later. Just like with MND, there are lots of possibilities.

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  • Graham
    Forum Member

  • Graham
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    I can only say how terrible this disease is. Make the best memories while you can.

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  • Shepster34
    Forum Member

  • Shepster34
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    just done my monthly measurements of my muscles. unfortunately I've lost another .5cm from each bicep and .5cm from my forearms. I noticed my biceps were aching last week and did wonder if this was the start of losing the muscle. strange to see it disappear without any fascillations.

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  • Shepster34
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  • Shepster34
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    well I've been to watch my daughter play football and have had a deep shoulder ache all the time I was there. it's like the weight of my arm is dragging my arm down and affecting my shoulder joint. I wasnt using my shoulder or arm, it was just hanging there.

    does this pain normally happen quite early on in the progression. I can use my arm and shoulder and have full range of motion. it seems premature to be affecting my joints so early. although I have atrophy in my shoulders there is still some muscle. it wasnt doing this last week, I only started with weakness in my left shoulder recently so I'm surprised this is happening so quickly. they've literally gone off a cliff.

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  • Shepster34
    Forum Member

  • Shepster34
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    Originally posted by Suefromwakey View Post
    Shepster from where I am I wouldn't bother too much about the EMG tests (apart from the pain of them) Albert's had 3 and none of them showed a single thing wrong with him! So much so when he was last asked to have one done he declined the offer!

    hi Sue

    I'm wondering if I may be similar to Albert. I was convinced the last emg would should up but it didnt. My weakness is even more obvious now, it's in both arms equally. whether it shows up on the next emg or not it will be obvious to the neuro I have some form of muscular degenerative disease.

    they've never tested my left side, so for the next EMG I will ask to test both arms. I'm pretty sure it will show on one or the other. my left shoulder has actually overtaken my right for weakness. I also noticed just going for a walk, that my left arm feels like its pulling on my left shoulder now and causing an ache in that shoulder. I found it hurt less to put my arm out of my jacket sleeve and use my jacket as a makeshift sling to take the weight.

    i seem to have hit another step with this progression. I've read its linear but I think as another muscle struggles you get that step feeling
    Shepster34
    Forum Member
    Last edited by Shepster34; 14 November 2021, 03:33.

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  • Shepster34
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  • Shepster34
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    Originally posted by LindaB View Post
    Shepster34
    Forum Member
    Shepster34 it might be worth self referring into your local counselling service. Being able to talk things through can help....supports taking the anti depressant...my view is they go hand in hand.
    I also think mindfulness can at least 'take you out of your head' as over thinking is draining. Try the Head Space app.
    Take care
    I've upped my sertraline for now. I takes a bit to kick in. I'm going to ring my gp on monday see if I can get an appointment. it just seems to be telephone appointments lately but better than nothing.

    we'll see what he says. I definitely need some kind of counselling. I have to accept what's happening to my body and get used to the idea that my arms are both going.

    I thought that I would have one arm go before the other but the left has now caught up and overtaken my right in weakness, so it feels like they are going as a unit.

    the only meds I'm currently on are sertraline and an acid reflux ppi to stop sertraline affecting my stomach. I take vitamin d and c and also magnesium zinc and coq10 but I've not seen any improvement so unsure what they are doing.

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  • Suefromwakey
    Forum Member

  • Suefromwakey
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    Shepster from where I am I wouldn't bother too much about the EMG tests (apart from the pain of them) Albert's had 3 and none of them showed a single thing wrong with him! So much so when he was last asked to have one done he declined the offer!

    You mention the flail arm to which I can't comment but he has Flail leg problem, for him its just simply that he has no control over his legs and they fall off the chair, bed or wheelchair, he doesn't have any sharp spasms or even any pain with it............I think this is perhaps another of those "Different for everyone" jobbys.

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  • matthew55
    Forum Member

  • matthew55
    replied
    NIV works

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  • LindaB
    Forum Member

  • LindaB
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    Shepster34
    Forum Member
    Shepster34 it might be worth self referring into your local counselling service. Being able to talk things through can help....supports taking the anti depressant...my view is they go hand in hand.
    I also think mindfulness can at least 'take you out of your head' as over thinking is draining. Try the Head Space app.
    Take care

    Leave a comment:

  • Shepster34
    Forum Member

  • Shepster34
    replied
    Originally posted by aussiegirl View Post

    To me it seems you're determined to have MND, why that is is anyone's guess. It took years before I noticed atrophy in my muscles, not months. Take the advice from the professionals.
    hi aussie girl. I really dont but my weakness is now too much to ignore. I look back at photos and can clearly see the atrophy.

    but the biggest change is how weak I now am. I struggle to do day to day things. I cannot use my arms or shoulders for long. just holding my phone to type is a struggle as my arms ache. I have a desk job and it's getting harder to hold my arms out to type.

    the fatigue I feel at the end of the day is unreal. I fall into bed And my arms and shoulders just throb from the fatigue. unfortunately even though I'm shattered I just cannot sleep.


    I'm sure the next emg will show up dirty. I really dont know how you all cope with this. you are all much stronger than me.
    Shepster34
    Forum Member
    Last edited by Shepster34; 13 November 2021, 08:11.

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  • Shepster34
    Forum Member

  • Shepster34
    replied
    Originally posted by LindaB View Post
    Shepster34
    Forum Member
    Shepster34 sorry I can't offer any medical advice. I just wanted to say living with anxiety is physically devastating and waiting a month to see a neurologist can feel like a lifetime. Maybe your GP could prescribe pain relief?
    Stay as strong as you can and use whatever strategies for distracting your thoughts possible.
    Take care
    thanks Linda.

    yes the wait is killing me. I'm not sleeping at all, and when I do I'm having horrible night terrors.

    I've progressed so quickly in these last 8 months. much quicker than before which seemed slow and linear. my shoulder weakness has gone off a cliff.

    I am so scared what the new emg will find I'm almost scared to have it. I know I have weakness, atrophy and no reflexs, it's like I'm waiting for the last piece to drop into place. Iam sure the last emg 8 months ago missed something.

    I am so low but dont know where to turn. I've tried everything to take my mind off it but as my arms ache all the time I have this constant reminder.

    I am currently on sertraline ¹ but doesnt seem to be helping.


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  • Shepster34
    Forum Member

  • Shepster34
    replied
    Screenshot_20211112-183124_ViHealth.jpg

    here is last nights results. my tracker wakes me up at 85% so the lowest I got was 84%.

    I get woken up at least twice every night as my spo2 plummets.
    Shepster34
    Forum Member
    Last edited by Shepster34; 12 November 2021, 18:39.

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  • Shepster34
    Forum Member

  • Shepster34
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    I keep reading mnd is not painful but i find that as both arms and shoulders are weak whenever I lift anything the ache that I get from doing it can be.

    when I lift anything that requires me to bend my arms I find I sometimes get a sort of mild shooting pain up my arm. it's definitely more than an ache. my grip is perfect so I sort of wince without dropping it.

    my shoulders ache whenever I hold anything for any length of time but when I lay on them at night I find it's quite a sharp pain deep inside.

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  • Shepster34
    Forum Member

  • Shepster34
    replied
    I have bought a professional spo2 tracker that i have been using to track my sleep. it's the same as what the nhs give you when they want you to perform a sleep study at home. this had shown me that once I am asleep my spo2 levels drop. I showed my gp my results and he is booking me for an in depth sleep study at a sleep clinic to look at not only my spo2 but my co2 levels and what exactly is happening once I'm asleep. hes checking co2 levels as I wake every day with a headache. I dont know if its linked to mnd or ipf or none and it's some form of apnea. my gp said because I an not overweight he doesnt think its osa and more likely central apnea.


    I had a hr ct scan on my lungs and have had a barrage of tests including walking o2 / hr tests and spirometry on a large machine in the respiratory dept at my local hospital. I saw the pulmonologist who stated it was mild ipf at the bottom of my lungs but I was not in need of any medication or oxygen at this time. my spo2 doesnt drop during exersion but I still feel a little breathless. although he saw me with my shirt off nothing was mentioned about my atrophy as it is very symmetric. I didnt mention it, I think its mnd nothing to do with my ipf.

    i can see atrophy in my shoulders and arms, i look at photos even from a few years ago and i see it. but it's the weakness in these areas that is worrying me. I tire very easily. I can still do everything for now but I dont know for how long for.

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  • Ellie
    Forum Member

  • Ellie
    replied
    Did your Respiratory Consultant comment on your extensive atrophy?

    You’ve obviously had an overnight SpO2 monitor to know that your Sats “drop dramatically during sleep” - when was that test?

    You must have had a full suite of pulmonary function tests on diagnosis, which can’t have been that long ago and should have identified issues.

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