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Thread: confused and scared

  1. #11
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    I have and appt with my local neuromuscular dr and will show him the test results from mayo. I will also bring up the lumbar punch . I have tried all the remedies for mucus nac, mucinex, alka seltzer still nothing helps the interesting thing is my spouse constantly clears his throat too. Thank you for your time terry.
    Mikael

  2. #12
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    Carol thank you for the offer as i live in the states it doesn’t make much sense to come to England. The three top hospitals in the United States are Columbia Presbyterian ,Johns Hopkins and first place Mayo Clinic. Not one would even consider mnd as being on the table for diagnosis. If i you think i could communicate with the mnd nurse my will give you my email address. Maybe she would have ideas what to look at. Thank. You for your time and consideration

  3. #13
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    Quote Originally Posted by njm View Post
    `Mikael:
    With utmost respect it all sounds very vague.
    You need to see an expert neurologist where the diagnostic question is :
    Is it MND? If not what is it?
    Otherwise you are stabbing in the dark.
    Best
    Charles
    Charles that’s what i feel like i’m Doing , stabbing in the dark. When the mucus problem started they did a modified swallowing test which turned up normal, have no trouble slurring words. Ive had more emg s than i care to remember, i asked about mnd only because of google, all these so call specialist have said absolutely no. Than I usually start asking than what is it? I get answers of neuropathy spinal stenosis, the thing is most of this came on so quick. Nov 2016 fell like when i bent my toes they were stiff , bilaterally, than apr 2017 the twitches started, aug 17 mucus started and here i am still having the symptoms. Thank you for your time , really dont know what else to do have contacted a holistic dr but i really dont have faith in that but will try anyway.

  4. #14
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    Mikael:
    You have been to the very best centres in the USA; John Hopkins and Mayo Clinic.
    If they say no MND then you should be overjoyed.
    Whatever your issue is it is not MND.
    Be immensely grateful.
    You need to accept their opinion.
    There are very ill people here who would love to trade places.
    Can I suggest you also consider counselling.

    Charles

  5. #15
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    Quote Originally Posted by njm View Post
    Mikael:
    You have been to the very best centres in the USA; John Hopkins and Mayo Clinic.
    If they say no MND then you should be overjoyed.
    Whatever your issue is it is not MND.
    Be immensely grateful.
    You need to accept their opinion.
    There are very ill people here who would love to trade places.
    Can I suggest you also consider counselling.

    Charles
    Charles a year into this i decided to seek counseling because i started thinking it was all in my head and i was getting very anxious. The symptoms still continue and lack of energy. So i do appreciate your advice and i am well aware of people on here who are very ill, and of course i am overjoyed with the drs but it still doesn’t explain the symptoms. I also know that there is no definitive test for als especially bulbar. Like carol and terry have said i have lots of the same symptoms and yes it could be anything. Thank you for your time.

  6. #16
    Forum Member Ellie's Avatar
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    Hi Mikael,

    You say you've been diagnosed with mild small fibre neuropathy and large fibre neuropathy by the Mayo clinic and add that not one Neurologist would even consider a diagnosis of an MND.

    I'm sorry you have been diagnosed with these neuropathies, but you can work with you Neuro and come up with a management plan.

    It's good that you're seeing a Psychiatrist and I hope she/he can allay your health anxiety which, as you know, is being exacerbated by posting on sites like this.

    Celebrate the fact eminent hospitals have said you don't have an MND. Go to GP about the mucus issues.

    Take care,
    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  7. #17
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    Quote Originally Posted by Ellie View Post
    Hi Mikael,

    You say you've been diagnosed with mild small fibre neuropathy and large fibre neuropathy by the Mayo clinic and add that not one Neurologist would even consider a diagnosis of an MND.

    I'm sorry you have been diagnosed with these neuropathies, but you can work with you Neuro and come up with a management plan.

    It's good that you're seeing a Psychiatrist and I hope she/he can allay your health anxiety which, as you know, is being exacerbated by posting on sites like this.

    Celebrate the fact eminent hospitals have said you don't have an MND. Go to GP about the mucus issues.

    Take care,
    Ellie.
    Thank you for replying , of course i was thrilled with their diagnosis but my symptoms dont match neuropathy. When I questioned this i get a shrug of shoulders and we will see you in 4 months.

    As far as health anxiety goes i am not one to go to a dr for every sneeze, I usually wait 2 weeks and if something doesn’t clear up I follow it up with my gp. Having these symthoms for so long with no answers is what lead to the physchitrist and he suggested the Mayo Clinic. I agree posting here may of not been my finest hour but dr Google will definitely brought all my symptoms up to mnd. Also several people have even said that the symptoms sounde very familiar. Thank you for replying , i am trying to sort this out
    Mikael

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