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Thread: Are they saying they suspect UMN disease??

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    Are they saying they suspect UMN disease??

    Hi I am new, I have been under investigation for neurological issues since Nov last year. When I saw my Neurologist just before Christmas she just said you have something affecting your upper motor neurons and was getting me to see the top specialist which isn't until may this year. I then get the copy of the written report that was sent to my doctor and it says "I clearly have a slow progressing upper motor neuron syndrome that is predominantly affecting my left side" I have positive babinski on left leg, spasticity in left leg, left hand is clumsy although it is dominant hand and deep tendon reflexes hip and ankle flexes unexpectedly weak. is upper motor neuron syndrome the same as UMN disease and does this sound like the indication. More confused than when I started investigations.

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    Forum Member nunhead_man's Avatar
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    Good morning Treefairy

    Welcome to the forum - I'm sure others will be along soon.

    And sorry to hear of what is going on for you.

    UMN means "upper motor neurons" of course and these are affected in motor neurone disease but also other things.

    I have damage in both my upper motor neurones and my spinal motor neurones (lower motor neurones) which has been diagnosed by my neurologist tapping around with his reflex hammer.

    I believe although I'm not sure that faster reflexes indicate damage although again somebody may be a long to correct me in a moment.

    "slow progressing upper motor neuron syndrome that is predominantly affecting my left side" certainly sounds like motor neurone disease but I'm wondering why it has not been specifically mentioned.

    I had to look up "babinski" and see it is the foot reflexes when you wipe a sharp object up the length of the sole.

    I am not surprised you are confused and all I can say is it took me about 18 months to move from a diagnosis of carpal tunnel syndrome to a firm diagnosis of motor neurone disease and luckily I am also slowly progressing.

    Warmly

    Andy
    Andy

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

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    Forum Member Terry's Avatar
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    Hi Treefairy and welcome to the forum;

    Sorry to hear of your problems and the lack of a diagnoses that leads to uncertainty.

    Upper motor neuron syndrome can have a number of different final diagnoses and reasons.

    How long have you had any symptoms?

    What tests have you had?

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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    Hi Terry.
    Thank you for your response, I have had a problem with my left leg progressively getting worse for about 4 years. However Nov 2017 I got a number of symptoms in one hit, first I have swollen optic nerves at the back of both eyes and they suspected brain tumour, aneurysm or IIH, my eyes stopped producing tears I now have to use eye drops 6 times a day and left eye does not respond to light being shone into it. my left leg and foot cramps constantly and goes into spasm that I cannot do anything about I have to wait for the symptoms to bypass. I had a PT to get stronger but we kept on having to do balance work and he said something was not quiet right and wanted me to see my doctor.
    I cannot do certain things with my left leg without it shaking it is like my left leg has a brake so I am asking it to move a certain way and it will not do it without difficulty and I cannot walk on tiptoe or heels (I am lucky I can walk and I hike as a hobby but on hikes I now need to use walking poles to keep me steady) I find I walk into people cannot walk in a straight line and trip over my own foot, my left hand is going the same way so I want to do something but my hand seems stubborn and doesn't want to move as fast. (I can still use my hand just slower and clumsy) and my memory has got worse my nick name at work is "Dory" they mean it endearingly not as a insult

    Whilst driving recently I couldn't move my left foot onto clutch I don't know if I forgot how or foot would not move it was only for a few seconds but that was scary. left foot goes dead and numb and right foot has started doing that in past week.

    I also have to start self catheterising as my bladder retains over 140ml, just finished tests on bowel and specialist thinks that is caused by nerve damage too so no surgery is going to improve those symptoms.

    New symptoms recently I stop breathing when asleep that started a few month's ago but getting worse so, my partner woke me up saying that I was breathing a high whistling sound yesterday when asleep. seeing Dr on 31st Jan for that and in past 2 weeks a nerve in chin twitches a lot and a crawling rippling feeling around left ankle and calf not painful just weird feeling.

    Dr are confused because they thought it was MS but I have had MRI on brain and spine and all clear, Lumber puncture was 25 high normal and all LP fluid tests have come back clear. vitamin's are OK.

    This sounds awful when I read this but I am very lucky I am still working, I can still walk and write and my life has not changed that dramatically. I walk and Hike over 30 miles at weekends but even I know I should be stronger and fitter than I am and my leg should be getting better not worse with the amount of exercise I do.

    Sorry for the essay,

    Tina

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    Thank you for your kind response Andy,

    Tina

  6. #6
    Forum Member Terry's Avatar
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    Hi Tina, I am no expert;

    Firstly, eyes are not normally affected with Mnd, sometimes so of us have trouble with our eye lids.

    4 years from noticing a left leg problem to now would be a very slow form of Mnd.

    Also we don't normally get any bladed problem to well into it.

    Not sure what 25 high normal Lumber puncture shows but I think that ours, (mnd people's) come back normal.

    I have had a crawling rippling feeling, like a bug is crawling around just under the skin but not on my lower legs.

    I stop breathing when sleeping, my wife thinks that I always have. It is know as "sleep apnea", it can be brought on by Mnd and other things.

    Don't know what to say about the other things, could be MS, Mnd or many other things. Over exercising can result in me having more trouble in moving things and rapid shaking of a arm.

    I would suggest that you get a automatic car so that the left foot doesn't have to do anything.

    I would have thought that a EMG test would be a good idea.

    Love Terry

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    Forum Member Kayleigh's Avatar
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    Hi Tina and welcome to the forum,

    Sorry to hear that you are having problems with your health.

    It is good that you are still able to work and carry on with most of your usual activities.

    My thoughts are along the same lines as Terry's, in that you may need to have an EMG and nerve conduction test. The neurologist who you are seeing in May might decide that you need to have these tests, and if necessary, could arrange for you to have them done.

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 8th January 2019 at 23:57.
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  8. #8
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    optic nerve issues will steer everyone towards MS. pick an MND speacialist neuroconsultant to see you.

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    Forum Member Lynne K's Avatar
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    Hi Tina. I'm sorry that you are experiencing a lot of symptoms. I hope that you get a diagnosis very soon because worrying what it might be must be stressful. I used to do Hill walking and rock scrambling regularly. When my ballance started to go I used one trecking pole, and then two. But lots of falls on my last ever hill walk resulted in me having to give up my favourite past time, my passion. I'm glad that you can still do your hiking. Take care, Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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