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  • Hi, new here

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Thread: Hi, new here

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  1. 11-02-2018, 11:18 AM #1
    Topaz84
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    Hi, new here

    Hello everyone. Thankyou for letting me join. Im a 33 year old female in UK.

    My doctor tells me she doesnt know what is wrong with me. And im seeing a neurologist next week after a long 4 month wait.

    A few years ago myself and everyone noticed my bad memory. Its become a bit of a funny joke between myself and family members. It has got to bad after the last few years. And i have even lost friends over forgotten appointments. I have been scared i have dimenta. But my doctor said no.
    I also had numbness in my feet and hands back then and developt shaking in my eyeballs. But i just got on with life.

    Last year (a year or so forward) im not great with time. I started to have difficulty talking.
    I started to stutter, slur occasionally, say the words, loose track of convo, forget words. I was really embarresed when it started and no idea why. I still get embarresed now as it makes me sound stupid.

    I have suffered with tiredness extremely. To the point even getting dressed is too much sometimes. I cant hold a conversation or hear what people are saying. Went to the doctors last year, had a blood test and all fine. Didnt mention the other stuff as i suppose i was ignoring it.

    This January it all kicked off quite badly. There was some type of turning point here. I couldnt ignore this anymore.

    I then started to get a tingling in my face which has now turned to attacks of pain on the right side. The doctor this year has said it trigeminal neuralgia. Thats the only diagnosis for anything i have.

    I now have nerve pain all in my body, arms, legs, hands, feet. This has been difficult to live with. I also now have weird feelings like water tricking down my legs, wet feelings. Numb patches, feeling like something is stuck under my foot, prickling. Burning sensations. Goosebumps for no reason in one area of my body or another.

    I also have muscle twitching, and spasms all over. I have spasms in my chest and i thought i was having a heart attack. My muscles go so tight and i struggle to catch my breath, walk, talk. I tried to hide this from people which is hard. This leave my ribs with a bruised feeling for days.

    So my doc did loads of blood tests and a hearing test. And all fine. A bit low on vit D so been taking that for around 6 months. But not improved my troubles.

    My doc has given me Amytriptaline which i couldnt take and im now taking Gabapentin which has helped quite a bit. But not completely and still having a lot of muscle spasms and some pain.

    I have lost sensation also in my lady area so this has effected private time for me. If you understand. I had a test for menopause but again fine. Which i was really suprised about.

    So im relying on the neuro now to help me : ( im desperate for answers. I feel my future may not be as i planned. I looked up my symptoms and of course MS came up and now im here.


    Thankyou for taking the time to read. Any reassurance or feedback would be greatly appreciated.

    Wish me luck for next week : )
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  2. 11-02-2018, 04:31 PM #2
    KoKo
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    Hi Topaz84

    Welcome to MS World.

    Sorry to learn that you have been having a multitude of symptoms.

    Good luck at your neuro appointment next week.

    Hopefully he will get to the bottom of what is causing your symptoms.

    You'll probably have many more tests, so additional patience will be necessary.

    Hang in there Topaz84, and feel free to come here to vent or ask questions.

    Wishing you all the best!

    Take Care
    PPMS for 21 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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  3. 11-02-2018, 04:45 PM #3
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    Welcome topaz.

    Good luck with your new appointment next week. I hope they order tests to help you get answers. Here is hoping things get better for you.
    Kathy
    DX 01/06, currently on Tysabri
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  4. 11-02-2018, 05:06 PM #4
    Topaz84
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    Thankyou so much KoKo and pennstater for taking the time to read that.

    My writing is not as good now as it used to be and spellings are more difficult now. Infact any form of communication is a struggle these day haha (got to laugh or i would cry)

    I really hope they do tests but on the other hand im scared to know the results. Deep down i know there is a problem. Its obvious i have accepted that but im not sure i really want to know it or see it written formally in black and white.

    Im nervous.


    Thankyou so much again and for welcoming me.
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  5. 11-02-2018, 08:38 PM #5
    KoKo
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    Quote Originally Posted by Topaz84 View Post
    Thankyou so much KoKo and pennstater for taking the time to read that.

    My writing is not as good now as it used to be and spellings are more difficult now. Infact any form of communication is a struggle these day haha (got to laugh or i would cry)

    I really hope they do tests but on the other hand im scared to know the results. Deep down i know there is a problem. Its obvious i have accepted that but im not sure i really want to know it or see it written formally in black and white.

    Im nervous.


    Thankyou so much again and for welcoming me.
    Topaz84 ~

    Nervousness/anxiety is certainly understandable!

    When you make out your list of symptoms to take to the neuro appointment, it might be a good idea to mention your anxiety too, if it is persistent.

    Take Care
    PPMS for 21 years (dx 1998)
    ~ Worrying will not take away tomorrow's troubles ~ But it will take away today's peace. ~
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  6. 11-02-2018, 11:34 PM #6
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    Cat Mom
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    Hi Topaz, sending some healing energy your way. Just want to wish you well with your appointment next week. It's completely normal to feel nervous, especially when you have so many symptoms. I hope you get some answers.
    Jen
    RRMS 2005, Copaxone since 2007
    "I hope to be the person my dog thinks I am."
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  7. 11-03-2018, 12:00 AM #7
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    Hello Topaz84, Welcome to msworld.

    I am sorry you are having so many sx's at a young age. It is good you are seeing a neuro. next wk. Hopefully he will order a MRI of your brain and spinal cord with contrast.

    I hoped you fine some answers and I wish you all the best.
    God Bless Us All
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  8. 11-03-2018, 01:28 PM #8
    Topaz84
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    Thankyou so much lovely people.
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  9. 11-04-2018, 03:40 PM #9
    Myoak
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    Hello Topaz,

    Welcome, bless your heart! My thoughts and prayers are with you for healing, help and clarity in diagnosis and treatment.

    My thoughts are also with your doctors as they work to resolve these issues affecting your health. Topaz, please make CERTAIN that you write down a good record of what you are experiencing and take that with you, won't you. Your doctors will be helped mightily if you do that.

    It is way too easy for any one of us to forget an important detail speaking from memory. I find it helps to write things down a couple days before the appointment. And, even doing that I still add details I had forgotten.

    The more information you give your doctors the more probable an accurate diagnosis and effective treatment.

    Good luck! My very best wishes abide with you. May love, hope, and peace strengthen you within and without as you face and conqueror these challenges to your well-being.
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  10. 11-04-2018, 10:50 PM #10
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    Hi Topaz sorry you are having such a bad time, I hope your neurologist visit gets you some answers and some direction, there is a lot of help and research for MS so you should get some much needed help, as for memory I tell people don't ring me email me or message me so I can go back over conversation and jog my memory good luck with this part of your life don't let it get you down take each day on its own and keep cool it helps Craig
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  11. 11-05-2018, 01:48 PM #11
    Topaz84
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    Thankyou so much myoak and dastardly. Thankyou for you kind advice. I have written a list Myoak becuase if i dont write things down it will be forgotten. I need to check it again though.
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  12. 11-05-2018, 06:15 PM #12
    502E79
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    Hi Topaz,

    Wanted to add to the advise Myoak and others mentioned regarding making a list (sx, etc.).

    During the first handful of years visiting my neuro, I would fax his office my edited list. I had established a good relationship with his nurse / assistant and realized she always had a few folders on his desk for upcoming appointments.

    He always reviewed the folder's latest entries.

    This saved time and he at times would initiate questions regarding items on the list. I could easily focus his attention on other entries.

    All went well with very little forgotten. I brought a hard copy to take notes.... I could still write back then.

    Jer
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