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Very worried awaiting diagnosis

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  • matthew55
    replied
    Hey it's sure is a brain freeze but we are here for you. 🤗😘😍😁xx

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  • LindaB
    replied
    Mmsm So sorry to hear your diagnosis....you'll find lots of great people on here. It's a good place for lots of advice and support.

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  • Ellie
    replied
    Mmsm A warm welcome to the forum, so sorry you've had to join us. It is a very hard diagnosis to deal with, especially when children are involved, but we are here to support you and help however we can.

    If you can, it would be better if you could copy your first post and pop it into the Introduce Yourself section, and you should get more replies.

    Take care,

    Love Ellie.

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  • Mmsm
    replied
    Hi. Yesterday I received my diagnostic MND bulbar. My symptoms start first week April this year one week after the first jab for covid. Less 3 months I can't eat, drink and almost not talk, losted more than 10kg weight. Struggling carry my shop bags. They say my life will be finished soon. But on this moment I just thinking about my kid's, one is diagnosed with autism. I'm scare for them more than me.

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  • matthew55
    replied
    I have to say my only pains are in my neck and my thigh which wakes me up. Nothing in my arms or hands despite extreme muscle wastage. I am not a doctor but you really don't sound like someone with the same thing as me and for that you should be grateful. 😁🤗😍😘xx

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  • Suefromwakey
    replied
    Shepster it cant have been left just like that, whats your next plan?

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  • Gordan1111
    replied
    Hi Shepster it sounds hopeful. What does doc say?

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  • denise
    replied
    Im thinking great things look good but im thinking not so good because you don't know what's wrong.

    🤔

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  • matthew55
    replied
    Shepster Firstly Pray that you don't have MND/ASL and secondly strart taking Fluxoetine. 🤗😁😘😍xx

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  • Shepster34
    replied
    got my results from my emg. they said they were normal in my arms and shoulder. I just dont get it. my arms are so thin and weak. I can move them but it's very painful like my elbows are not being held together properly by my muscles anymore. my ck blood test came back as 85 ref 40-320. my gp says that's normal. it's both arms now but right is worst.

    the worse bit is the pain when I move them. especially when bending or twisting. strangely my grip is fine on both hands.

    20210627_232614.jpg
    Attached Files

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  • Kayleigh
    replied
    Hi Olivia,

    I like your positive attitude.

    It is good to hear that your symptoms have barely changed in the last 6 years.

    I don't know what the future holds concerning how quickly my health is likely to decline. Like you and many others on this forum, I try to focus on living life as fully as I can - there are still happy times to be enjoyed and special memories to be created

    Kayleigh x
    Last edited by Kayleigh; 17 January 2019, 17:21.

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  • Olivia H
    replied
    It would be great if there was a definitive diagnosis/test for such a serious condition, rather than the prolongued process that so many of us have to go through. I personally have lots of symptoms which are not common to mnd, but others that are, and 2 emg tests have been definitive. But my symptoms have barely changed in 6 years, after the first 6 months, which is pretty unusual. I can only feel for those who suffer the rapid progression of this horrible condition. Equally, I strongly believe in being positive and adapting to survive. When I was first diagnosed I got the distinct impression the medical people expected a fast decline but thankfully not so. I stop looking for little changes and hyper scrutinizing everything because I think it makes you worse. I think this can be beaten.

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  • Guest's Avatar
    Guest replied
    You don’t have ALS
    Why?
    1) you have parasthesia
    2) you don’t have fasiculations
    3) You have no measurable progression in 5 months
    Last edited by jonboy53; 13 January 2019, 12:10.

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  • Kayleigh
    replied
    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.

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  • Guest's Avatar
    Guest replied
    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!

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