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Thread: Terrified about Motor Neuron Disease/ALS

  1. #1
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    Apr 2013
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    Terrified about Motor Neuron Disease/ALS

    Hi

    I've not been feeling that well for a long time now but I feel like it's getting worse. It started last year when I realised that my leg felt weak when going up steps but it has got a lot worse. I can barley walk or stand for a long time as my muscles are sore and weak. I have almost collapsed a few times because I got so out of breath and just didn't have the strength in my legs. It happened again when I went out today. I only went to this little cafe not far from where I parked. I had to stop a few times walking from the car park. And when I got there I was feeling sick, heaving, feeling dizzy and like I was going to pass out. I managed to get to a chair and somebody got me a glass of water because they said I looked really ill. My legs had gone to jelly and they told me that I went really red then really pale. I had to link somebody's arm walking back to the car park and they said I looked really wobbly. It was like I was using my entire strength just to move my legs.

    I had blood tests in December and it came back that I was low in vitamin D, folic acid and vitamin B12. I was put on meds for them which I have finished, except I still have a few vitamin b12 left to take. I had blood tests again last week and they came back normal. I still don't feel well, if not worse.

    Im really scared that I might have something really serious. I just want to have my energy back and walk normally again

  2. #2
    Join Date
    Apr 2012
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    905

    Re: I'm really scared, feeling weaker and weaker

    You live in the UK - practically everyone that lives here is deficient in Vitamin D. Don't quote me on this, but I think it's the most common vitamin deficiency here.
    IMHO, it is safe to take vitamin D supplements all year round, ongoing, as we simply don't get enough of it here.

    As for your other deficiencies - again these are commonly encountered and are usually treated with "Vitamin B Compound Strong" tablets to treat the entire complex. You can follow up with your doctor for further advice, but if you have a poor diet, are a heavy drinker or otherwise at risk of deficiencies in this group, there wouldn't be an issue with being on them long term

    There is a syndrome called "Tired All The Time" (TATT) because this is such a common symptom. There are so many reasons you could be feeling this way, but as you've been to your doctor he or she has presumably ruled certain things out. It can be idiopathic e.g. without an underlying cause, and unfortunately there isn't much that can be done for it

    But follow up with your doctor and keep us posted

    Good luck
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  3. #3
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    Apr 2013
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    142

    Re: I'm really scared, feeling weaker and weaker

    Quote Originally Posted by RadioGaGa View Post
    You live in the UK - practically everyone that lives here is deficient in Vitamin D. Don't quote me on this, but I think it's the most common vitamin deficiency here.
    IMHO, it is safe to take vitamin D supplements all year round, ongoing, as we simply don't get enough of it here.

    As for your other deficiencies - again these are commonly encountered and are usually treated with "Vitamin B Compound Strong" tablets to treat the entire complex. You can follow up with your doctor for further advice, but if you have a poor diet, are a heavy drinker or otherwise at risk of deficiencies in this group, there wouldn't be an issue with being on them long term

    There is a syndrome called "Tired All The Time" (TATT) because this is such a common symptom. There are so many reasons you could be feeling this way, but as you've been to your doctor he or she has presumably ruled certain things out. It can be idiopathic e.g. without an underlying cause, and unfortunately there isn't much that can be done for it

    But follow up with your doctor and keep us posted

    Good luck
    Thanks for the reply. I've seen my doctor again today. He confirmed my last blood test results were back to normal. He checked my blood pressure, pulse etc. He doesn't think it is just anxiety either. He has lowered the dose of the pregabalin slightly to see if that helps at all, just in case that is causing it. I just hope I feel better soon because it is awful feeling like this

  4. #4
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    Apr 2013
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    142

    Terrified about Motor Neuron Disease/ALS

    Hi,

    I have posted a few times recently about feeling weak but I'm getting really really scared now that I might have MND.

    Last year, I went over on my ankle about 3 times in a month, though I do think that was because of uneven footpaths. Then I started having difficulty walking up steps with one of my legs, I felt like i had to pull my self up with the rail to get up. I have been feeling more and more exhausted and when I went to the doctors, they did blood tests which showed I was low in vitamins D, B12 and folic acid. I was put on supplements for those and had another blood test recently which showed that they are now fine. My legs have got weaker and I have got more and more exhausted though dispite my vitamins improving.

    I almost collapsed a few times when out and I feel like I'm going to collapse if I am even just walking a small distance like around the supermarket. I have to keep stopping and even then my legs feel awful. It's like I'm walking up a steep hill all the time even though i am walking on the flat.

    I can't walk up steps without using the rail to pull myself up and it's really scary. I go dizzy and feel sick if I stay stood up or walk for too long.

    Does this sound like I am overreacting or does it sound like I am developing Motor Neuron Disease? I have googled it and that is the main thing that keeps coming up. I have last seen my doctor about 2 weeks ago and he lowered the dose of the pregabalin slightly in case that is causing it, there has been no change in my symptoms yet though. I have to see him again in 2 weeks but I am just terrified at the moment that he will send me for tests and it will turn out to be MND.

  5. #5
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    Re: Terrified about Motor Neuron Disease/ALS

    Hi

    This is just a courtesy reply to let you know that your thread was merged with another of your threads.

    Please when posting on similar topics add it onto your previous post rather than starting a new one.


    It is nothing personal it is just to make it easier for people to follow your story and to give you advice as a whole.
    __________________
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    “Don't be afraid of death; be afraid of an unlived life. You don't have to live forever, you just have to live.” - Natalie Babbitt

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  6. #6
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    Apr 2013
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    Re: Terrified about Motor Neuron Disease/ALS

    I had a blood test on Tuesday again. They checked my thyroid, iron, vitamin D and creatine levels.

    My thyroid and iron both came back normal. My vitamin D was borderline and my creatine was abnormal and apparently I need to have it checked again in 4 weeks. I'm not too sure what creatine is but I do know there is something they check called creatine kinsae(sp?)with motor neuron disease. When I also looked it up it said something about kidney failure so I am even more terrified.

    I only spoke to the receptionist about the results today so I asked for an appointment to see a doctor. I was told she has no appointments now until Friday so to ring on Wednesday for an appointment on Friday. I am dreading waiting this long. I struggled to walk up the big step we have at the back door yesterday and struggled walking a short distance in town as well so I'm just scared it's serious. I don't want to think this way but I can't help it because I just feel so weak at the moment.

  7. #7

    Re: Terrified about Motor Neuron Disease/ALS

    I feel you on this. I totally do the same thing of googling what specific things in blood tests can be. The best thing to do is realize levels can change and I know it is scary to google it and see that but it will truly be ok.

    I get the same way about appointments. It really is disheartening. Try to take deep breaths and do things that will really lower your stress over the next few days. I am so sorry you are going through this, because I am right now too and am also terrified.

  8. #8
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    Apr 2013
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    Re: Terrified about Motor Neuron Disease/ALS

    Quote Originally Posted by inogerp View Post
    I feel you on this. I totally do the same thing of googling what specific things in blood tests can be. The best thing to do is realize levels can change and I know it is scary to google it and see that but it will truly be ok.

    I get the same way about appointments. It really is disheartening. Try to take deep breaths and do things that will really lower your stress over the next few days. I am so sorry you are going through this, because I am right now too and am also terrified.
    Thanks for the reply

    I am sorry you are also terrified and going through the same thing. It's awful. Sending you big hugs

    I just hope the doctor tells me it is something that can be fixed because I just want to be able to go out without struggling to walk. It has finally been sunny here today so I have been in the garden with a sun top and shorts hoping that helps to get my vitamin D levels back up

    Just keeping my fingers crossed at the moment that I will eventually get my strength back

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