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Thread: Re-Introduction... haven't been here in a while

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    Community Member serene_butterfly's Avatar
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    Default Re-Introduction... haven't been here in a while

    Hi Everyone

    Haven't been around in a while as things haven't been great, but thought I would come back, especially as the new site is looking great!!

    Well, though I would re-introduce myself, my name is Rhiann and I am 25 from South Wales. My problems started I would say when I was about 8 years of age when all of a sudden whilst shopping for new wallpaper I had a severe dizzy spell. They continued for a while before my parents took me to see the doctor. After some tests, which all came back normal, the G.P couldn't find a cause for the dizziness so they put it down to 'anxiety;.

    Anyway, these continued all throughout my years growing up gradually getting worse and worse, especially whilst I was at university. Through all these years, I went through occupational therapy to learn breathing exercises and other things to try and stop the dizzy spells but nothing worked, at this time also started getting short severe attacks of vertigo as well as the dizziness.

    Decided to go back and try and get referred to see a neurologist, which I had to fight hard to get a referral to as I was firmly in the 'psychological problems' zone by the doctor I had seen. Another doctor eventually agreed to refer me to an ENT consultant in case it was a vestibular problem as well as the referral to a neurological consultant, which has a much longer waiting list.

    Got seen and ENT problems were ruled. Few months later went to Cardiff to see the neurologist and after giving me a full neurological examination he agreed that something more was wrong as he noticed some abnormalities, such as having a positive babinski reflex and increased muscle tone in the legs. My Mum also told him the story of when I was born they thought there was something wrong with me as when the nurse held me in the palm of her hand I held my legs rigid, which apparently babies are not supposed to do. So I was sent for an MRI .

    I was eventually (after some problems with the neurologist I saw leaving the hospital, and then had to see some someone else!) diagnosed with a long-standing brain stem lesion due to some problem at birth possibly but not sure of the exact cause, and also have spastic paraparesis. My legs have always felt stiff and looking back now had a lot of discomfort when exercising or walking up the very steep hill by where we live but never really thought anything about it, as they've always been like it since I was a child so didn't have anything else to compare to it.

    Since I was diagnosed last year felt I have got increasingly worse, the dizziness is there constantly in the background although the severity and intensity of it does change throughout the change, and still have the intermittant attacks of vertigo which is a lot more severe but lasts a very short amount of time, sometimes brought on by strobe, or flashing lights, etc. Legs have also gotten worse, and have gotten increasingly weak, and am unable to stand for more than 10 to 15 mins approximately before they give way on me, and experience a lot of pain and discomfort, at times have left me unable to sleep. I have recently been prescribed gabapentin (300mg a day). My balance is also severley affected and have had to start using a walking stick to help me try and keep my balance to try and avoid myself falling over, which happens quite a lot of the time!!

    Anyway, that's my reintroduction to the site, hope to start using the site a lot more, I'm unable to get out by myself due to the falls and problems with legs so feel lonely and isolated a lot of the time so am really hoping to meet others who are able to relate amd hopefully meet plenty of new friends. Sorry if I have rambled on and on and bored everyone!

  2. #2
    Administrator/SYSOP Mike Weins's Avatar
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    Welcome back butterfly

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    Community Member serene_butterfly's Avatar
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    Thank you Mike :)

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    Welcome back!!!! Come visit the forum for emotional support. There's a great group of people on the forum.
    Take care,
    Dawn

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    Community Member serene_butterfly's Avatar
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    Thank you Dawn, will definitely make sure I go and check out the Emotional Support Forums.

    Take Care

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    Hi Butterfly,

    It's great to see you again! Stop down on the Epilepsy Forum if you would like to. I know that I get dizzy a lot of the time and it's all related to my seizures. Here's wishing you well and May God Bless You!

    Sue

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    Community Member serene_butterfly's Avatar
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    Thank you Porkette, it's great to be back!

    I will check out the epilepsy forum at some point, doctor is looking at getting me tested possibly for some sort of seizure disorder, as he thinks it could possibly be the cause of the short attacks of vertigo, they have eased slightly too since I've been on the gabapentin. I will check out some of the posts to see if I can relate to any of the experiences by other members.

    Thanks again Porkette


    Rhiann

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    I started thinking you have what I have there for a time as well. I have bouts of dizziness myself and mine are caused by menieres disease. An eigth nerve thing. Weird but i also have muscle trobules but i was diagnosed with fibromyalgia even before it got its' name almost. In any case i am glad you found us. I can be found in the Emotional Support forum as well. I could belong to so many different forums but it is jusy easier for me to get support from that group as we all have varied medical problems anyway. I look forward to seeing more posts from you

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    Hi Butterfly,

    You might want to try taking vitamin B12 1000 mcg. once a day this will help calm your nerves and relax your muscles. Also try putting a cold washcloth on your face and neck 2-3 times a day. I was in a medical study
    where they found that keeping the brain cool will stop the neurons from firing up in the brain and help stop seizures, help people with MS and many other neurology disorders. I wish you the best of luck and May God Bless You!

    Sue

  10. #10
    Community Member serene_butterfly's Avatar
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    Quote Originally Posted by Porkette View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Hi Butterfly,

    You might want to try taking vitamin B12 1000 mcg. once a day this will help calm your nerves and relax your muscles. Also try putting a cold washcloth on your face and neck 2-3 times a day. I was in a medical study
    where they found that keeping the brain cool will stop the neurons from firing up in the brain and help stop seizures, help people with MS and many other neurology disorders. I wish you the best of luck and May God Bless You!

    Sue

    Hi Sue

    Thank you for the advice, will definitely have to try some of those tips.

    Rhiann

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