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Thread: Very worried awaiting diagnosis

  1. #11
    Forum Member nunhead_man's Avatar
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    Hi Shepster

    Welcome!

    I get really anxious about every extra little twitch and ache - but as Ellie says, this disease is just about motor neurone stopping working and therefore the muscles they attach to stopping and then wasting away.

    I wanted to ask what set you off on this track? Do you have a relative with MND or somebody that you know has it?

    Best wishes for a clear diagnosis

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  2. #12
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    Hi Andy

    I admit i have extreme health anxiety.

    i saw something on tv recently about someone with mnd and the symptoms this guy started with resonated with my own.

    I am male ,48 and although it is usually linked to older people, men my age incidence starts to go up.

    Having weakness in all 4 limbs, occasional twitches, perceived atrophy. I even think my reflex is hyperreflexic as my knee shoots up when tapped at home. When i stupidly googled the symptoms it came up with als/mnd. Which led me to this website.
    I have since developed the problem with my right foot so i am more worried than ever before.

    My foot is my biggest worry as i can feel it getting harder to pull my toes upwards so i may be getting the foot drop. Its a definite ache that hurts more when i pull my toes up and use the muscle.

    Is it really unusual to get these pains in my shin when the neurons are dying?, ive had the foot one for a month and im dreading the day i wake up and i can no longer use it.
    Surely when 50% of the neurons or whatever the scientific number is where the muscle is weak but can still be moved? Isnt thst the stage im at?

    I initially thought it could be myositis but my ck levels are normal. Then once i started with the weakness and cramping in my hands I knew it was serious and led me to mnd. Todays pain has been in my wrist, a sharp pain that comed on every few minutes but only lasts seconds thankfully.

    Ive been thinking about what you guys have said about muscle wastage and you guys are right that i cannot definitely tell. I think i do have some but as its both sides of my body im inclined to believe its not actually affected me yet.
    However, i am really worried about the weakness and pains.

    I have my emg and nerve condition study on Monday. I am scared stiff. Ive heard if it starts making alot of noise it means there is muscle damage which i think will mean i have mnd.

    After doing a little research it turns out my age group 45-49 has an incidence of around 53 new diagnosis's per year. Or equates to 2.3 per 100,000. 10% of those are passed down from family so 47 people are diagnosed are sporadic. I guess it is very rare but someone has to get it.
    Last edited by Shepster; 4th January 2019 at 16:31.

  3. #13
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    Hi there,

    Kayleigh's suggestion of booking an appointment with a GP makes sense. I would ask for a GP with some neurological experience. You might need to be instant on this but its worth persevering even if this means calling in to the surgery in person to arrange an appointment.

    I would be worth asking the GP if you could use the same GP until it clear what might be the issue. Save having to explain what the issue might be over and over again.

    and then what Barry said here

    Quote Originally Posted by Barry52 View Post
    Hi Shepster,

    You said you are under a rheumatologist at Sheffield. If you are wishing to see a neurologist then the Royal Hallamshire has one of the UKs leading team in neuroscience so you might want to ask for a referral and they will conduct all the tests. There is no biomarker for MND so they have to rule everything else out before conclusion.

    Best wishes,
    Barry
    It helped me to keep notes of symptoms and then who you see and what action they agree to take and by when. It's not very exciting to do but it may help you know you've got everything recorded on paper ( computer ? ) so that i wasn't thinking about it every moment- though I guess this is easier said than done,

    Kind regards
    Jaffabeach

  4. #14
    Forum Member nunhead_man's Avatar
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    Hi Shepster

    Is there any way in which you can dial down your extreme health anxiety?

    It may be that getting stressed will make things worse.

    As Ellie has already said, there is really no pain associated with motor neurone disease.

    What I've said before elsewhere here is that motor neurone disease is no respect-er of balanced pairs of muscles - so in my forearm for example I have pulled muscles where the extend / contract pair is unbalanced.

    But this is a normal muscular ache and nothing to do with motor neurone disease per se so there might be pains your shin from exercise - not from when the neurons are dying.

    Again, weakness in hands could be motor neurone disease but cramping?

    And pain in your wrist could possibly come from exercise but certainly not from motor neurone disease.

    Do let us know about your emg and nerve condition study on Monday.

    Concerning numbers do have a look at some other threads on the forum - somebody will correct my technical terminology that incidence is quite low perhaps only 5000 people extant in the UK at any one time with the disease because diagnosis is often late and some people do not live very long post diagnosis but it seems that possibly one in 400 or more have a diagnosis of motor neurone disease at death.

    Take it easy over the weekend as worrying will probably only make things get worse.

    Warmly

    Andy
    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.

  5. #15
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    Hi Guys

    Thanks for all replying above, i really appreciate it. I am trying to get a hold of my anxiety.

    Ive been thinking about all my pains. Could it be that i am having spasticity in my muscles and they are causing the pains? Is that how spasticity works in the early stages of als/mnd?

    Ive been trying to get my head around how the stages of mnd affect a muscle. Im struggling to be honest. I get that neurons are attached to muscle fibres, so as they die off the muscle fibre doesnt get the signal. Now i assume there are thousands of fibres in a single muscle. i think im correct that neurons are batched in motor units? So do single neurons die off and therefore each fibre shuts down singularly or does the muscle shut down as one complete motor unit? If it shuts down as a unit where does muscle weakness fit into the scenario. I checked everywhere for just a simple explanation but i cant find one. Im just trying to get my head around how it works, does progressive mean one complete muscle at a time or that it progresses one fibre of a muscle at a time?

    Sorry if im annoying, this is my lost post for the weekend.

    Regarding my emg on Monday? What kind of noises will a "dirty" emg make? Will it be quiet if its fine?

    Thanks
    Last edited by Shepster; 4th January 2019 at 20:42. Reason: Grammar

  6. #16
    Forum Member Kayleigh's Avatar
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    Hi Shepster,

    I can't answer your questions about the scientific stuff (science never was, and never will be, my 'thing'!), - but my gentle advice to you is to try focussing on the bigger picture.Try not to get stressed about every tiny detail.

    To get a diagnosis for your symptoms, you need to go with the flow of things and let the medical professionals 'do their thing' so that they can do their job of diagnosing you.

    If you are worried that you may have a neurological condition, then you should see a neurologist to get their specialist opinion. It sounds like trying to do the diagnosing yourself is raising your anxiety levels, which in itself is not good for you.

    Understandably, you are worried about what is causing your symptoms. But please do not let worry and anxiety take over your life.

    I used to be a worrier, but have realised that worrying drains our energy and does not achieve anything.

    Please try to take one step at a time. First step = Chill out this weekend and don't worry so much!

    Best wishes
    Kayleigh

    P.S I am approx your age and although my diagnosis was not what I hoped for, my life is far from over and I try to stay positive about things, as do many many wonderful people on this forum. Whatever life throws at us, we must be brave and stay strong! It is amazing what having a positive attitude in life can achieve
    Last edited by Kayleigh; 5th January 2019 at 00:14.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  7. #17
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    Quote Originally Posted by nunhead_man View Post
    Hi Shepster

    Is there any way in which you can dial down your extreme health anxiety?

    It may be that getting stressed will make things worse.

    As Ellie has already said, there is really no pain associated with motor neurone disease.

    What I've said before elsewhere here is that motor neurone disease is no respect-er of balanced pairs of muscles - so in my forearm for example I have pulled muscles where the extend / contract pair is unbalanced.

    But this is a normal muscular ache and nothing to do with motor neurone disease per se so there might be pains your shin from exercise - not from when the neurons are dying.

    Again, weakness in hands could be motor neurone disease but cramping?

    And pain in your wrist could possibly come from exercise but certainly not from motor neurone disease.

    Do let us know about your emg and nerve condition study on Monday.

    Concerning numbers do have a look at some other threads on the forum - somebody will correct my technical terminology that incidence is quite low perhaps only 5000 people extant in the UK at any one time with the disease because diagnosis is often late and some people do not live very long post diagnosis but it seems that possibly one in 400 or more have a diagnosis of motor neurone disease at death.

    Take it easy over the weekend as worrying will probably only make things get worse.

    Warmly

    Andy
    easy for us to say but you simply have to calm down, you are not helping yourself or anyone trying to diagnose you. I must say it doesn't sound like MND. my legs weakened almost instantly. limping in the late August to mobility scooter in the February. you seems miles off that so try to relax. you are very young so the odds are in your favour

    good luck.

    p.s. sorry to be blunt.

  8. #18
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    Hi everyone

    Been for my emg and nc this morning.

    They werent too bad. Hardly felt to needles with the emg. The nc was actually a little more painful as it sent the electric shocks up snd down my leg. It reminded me of the shock when you catch your funny bone.

    The emg itself was just quiet the a loud noise when i tensed or moved my muscles. The sound reminded me of when wind is blowing into a microphone.
    He didnt give me any indication of whether it was ok or not.

    He did say one strange thing, he asked me if i had had any problems with my sciatic nerve? I replied that i hadnt.

    Why would you think he asked that?

  9. #19
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    Quote Originally Posted by Shepster View Post
    Hi everyone

    Been for my emg and nc this morning.

    They werent too bad. Hardly felt to needles with the emg. The nc was actually a little more painful as it sent the electric shocks up snd down my leg. It reminded me of the shock when you catch your funny bone.

    The emg itself was just quiet the a loud noise when i tensed or moved my muscles. The sound reminded me of when wind is blowing into a microphone.
    He didnt give me any indication of whether it was ok or not.

    He did say one strange thing, he asked me if i had had any problems with my sciatic nerve? I replied that i hadnt.

    Why would you think he asked that?
    as we discussed on the phone, slipped disc would give you sciatica - you gotta stop worrying so much mate!

  10. #20
    Forum Member Kayleigh's Avatar
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    Hi Shepster,

    I agree with Jonboy.

    Try to stop self diagnosing. The next step is to get the results of the tests you had today. Until then try to relax!

    All that 'Dr Google' is going to do is give you 'possible maybe's'. Let the professionals do the diagnosing - that's why they went to medical school for so long, and it is what they are paid to do!

    Kayleigh x

    P.S welcome to the forum jonboy.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

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