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Neuro Sarc

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peter52775
peter52775

Hi all, is there anyone out there with confirmed Neuro Sarcoidosis,,, if so did your symptoms include stroke like symptoms i:e collapse , then excruciating head pain and numbness/weakness on 1 side, it's 5 years now since my first collapse but still have numbness and weakness on my left side, also Headaches are permanent now just some days are worse than others,

Today is my 6th collapse and the most debilating yet.

My stroke docs says its not a stroke because not allot shows up on Mri but the numbness and weakness is persistent and I can usually walk again after 7 to 10 days,

My neurologist says its a stroke because the stroke symptoms are still there after 24 hours,,,, the stroke docs says its not a stroke because they can't see it on Mri scan, They won't give me the thrombolisis for blood clots either.I'm getting so f###ed off with it all I really don't want to come round after the next one, because of the uncertainty of what is or isn't on a stupid machine I feel forgotten about while in agony day in day out, All I want is an answer is whats wrong with me, it didn't help much my mum died of 1 massive stroke a few years ago

Help,,, please can anyone had similar problems

PS. Sorry if my spellings aren't spot on I'm a bit out of it

0 likes, 21 replies

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  • peter52775
    peter52775

    Posted

    Hello people, I'm finally out of hospital and back home but yet again I have no answers as to what causes these collapses, a junior doctor suggested I may have F N D which means functional neurological disorder, or as I called it another f@@k@@z get out quick answer. I said to the docs who where there I'm open to suggestions and ideas but nothing to insult what intelligence I have left we shall see what transpires,,,, I will of course keep you informed

    • camey03589
      camey03589 peter52775

      Posted

      Glad your home, hang in there man, let me know what they come up with.
  • vineetk
    vineetk peter52775

    Posted

    hello peter,

    came across couple of article about Dr Desmond Kidd and his experience about neuro sarcodoisis, and i have been trying to get an appointment with him but since i am a patient of neuro sarcodoisis and haven't yet found a doctor who would know much about the disease, but unfortunately seems that Dr Kidd has retired from London hospitals. so i just wanted to know if there is anyone who is in touch with him or any other Dr who has similar experience.

    waiting to hear from you

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