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Pupkin55

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  • Guest's Avatar
    Guest replied
    Thankyou , I have read up on this .

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  • marge
    replied
    Hi Pupkin

    This info maybe of some help.
    https://patient.info/health/function...gical-disorder

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  • Guest's Avatar
    Guest replied
    Hello , I'm still here awaiting a 2nd opinion my doctor is sending me to a different hospital for it.

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  • njm
    replied
    You should be heartily relieved.
    What does that diagnosis mean?
    A slow, non-life shortening neuropathy?
    I would take that.

    Charles

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  • Guest's Avatar
    Guest replied
    Hi All, I'm still here I had my diagnosis as functioning neuropathy disorder, but I don't believe it as I'm struggling , not sure what to do really, I don't like to tell my family as I know they want me to believe the diagnosis n it upsets them if I question it. Hope you are all doing good and keeping as well as you can xx

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  • Terry
    replied
    Hi Chebs;

    I didn't bother with injections because I thought the nerve had been taken out, WRONG again. I have a couple of sensitive teeth but hopefully special tooth paste will lessen them. They do feel a lot better.

    Off having an ingrowing toe opp at 9 am tomorrow, I might just stay in bed! LOL.

    I've had a couple of viruses this year that really knocked me to say the least, I hope you soon feel better and have loads of energy.

    Love Terry

    Love Terry

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  • chebs
    replied
    Hi Terry,
    how did it go at the dentist, all sorted now??
    I think it won't be long till I have to go!!! causing me some pain, (back Molar) plus not much room for movement!!
    Oh well, I'm tired again, this gets annoying need to plan more, at moment suffering with some sort of infection??? temp up, stiffness in my neck and dry eyes, feeling quite poorly tomorrows day 3 so i'm hoping it will leave me soon, if not it will be docs, Ive been given access to my GP any time after her appointments... really helps as no need to book!!
    well, take care Terry
    Chebs xx

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  • chebs
    replied
    Hi Pupkin,
    sorry for the delay in answering you..
    Anyone can ask for a second opinion, also, a MRI may assist them in finding reasons for your problems... Don't give up, have a break then go back into battle!! the answers are out there,it just takes time.
    take care
    Chebs x

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  • chebs
    replied
    Hi Tim and Mary,
    Sorry to hear about Mary's fall.. I too have problems with my balance so I have to walk with a stick.. lately seem to get out of breath just walking, now have to have regular breaks.. Also seem to have muscle wastage in my face (double chin going)
    I'm still waiting to see my neurologists, recently been given some information that my cousins granddaughter has been diagnosed with SMA Atrophy Type 2, she's only young.. but apprentley its genetic and type 4 is an adult form which can cause MND?? rather interesting..
    Will let you know outcome.
    Well, take care of each other
    love
    Chebs and Alan

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  • Lynne K
    replied
    Hi Pupkin. Sorry for my very late reply. I only just found your message. As a woman it erks me that there has always been a percentage of the medical proffession who treat woman who come before them with undiagnosed symptoms ie back ache as being neurotic. Happily the numbers of doctors thinking like that have declined. However if you have real symptoms that are causing you stress wouldn't it have been more useful for your doctors to find a cause and maybe in the meantime set up talking therapy for you where you can offload about your fears instead of the doctor doling out sweeties (anti-depressants). Ok, this is just my humble, a little feminist own opinion. But keep talking here and elsewhere. It cannot do any harm and it ought be very good for you. Good luck for your June appointment. Lynne
    Last edited by Lynne K; 2 May 2018, 19:51.

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  • Guest's Avatar
    Guest replied
    Hi Chebs and Alan.
    It's best to have the peg fitted while the body can still take the operation, I have to clean it, twist it and flush it every day even though she not being fed through it as yet, being able to swallow liquids, she was diagnosed in October last year and the peg was fitted this January, about 4 months after diagnosis.
    I think I know what your saying about looking in the mirror, Mary was the same and had started pushing me away when I went to give her a hug or a kiss, and cry over the slightest thing, but she has changed a lot since taking the citalopram, accepting hugs and kisses, I tell her everyday I love her and together we will fight this terrible disease, even if there's not really anything I can do to help except give her all my love and attention.
    She took a fall on Sunday and had to have 5 stitches above her right eye, I must confess this scared both of us, Mary because she finally realised that she's not 100 % steady on her legs now, although she still has mobility, needing frequent rests, but she refuses to give in and me because of the amount of blood and her uncontrollable shaking.
    Mary and myself have, like yourselves, have never asked for help, maybe just the odd tenner until payday, we soon found out you have to ask because nobody is free with the information required, I found out on this forum what to ask and who to ask, which after the initial embarrassment asking gradually become easier, mainly through necessity.
    At the moment we have a wonderful support team looking after Mary ( and myself ) from the cns, dietitian ect to the carewatch team, even the council have said they will do all they can to help ( not holding my breath on that one though
    listen to Alan when he tells you that you are still beautiful, he is telling the truth, take care and all our best wishes
    Tim and Mary

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  • Guest's Avatar
    Guest replied
    Hi , just been reading your posts, I'm so sorry you feel so low , I think you are a very brave lady and you have taken the time to message me even when you have got so much to deal with yourself, I didn't get any answers at my appointment I haven't replied as just having a think about where I go from here as still have all the symptoms , they may give me a mri scan but it's unlikely , I wonder if I didn't explain myself very well because i have a body that's not the same as it was last year n I feel quite sad that I'm seem to be the only one who can tell , driving is still useless , I hate doctors n hospitals I'm not an attention seeker so I think why do they think I enjoy going to the doctors so much , Thank you all for your thoughts I wish you all the very best and love , I think I prob came out the hospital disappointed really .

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  • chebs
    replied
    Hi Tim and Mary,
    I think I'm suffering with my emotions at the moment, look in the mirror and don't know that person staring back, I seem older and fatter, husband Alan says I'm still beautiful and the same woman he married.
    I know at the moment its all "up in the air" with more dignosis, so Ive decided to take a day at a time, Yesterdays gone and tomorrow's promised to no one, so live for today....
    I too mentioned resuscitation to my doctor in front of Alan, he felt the same, realisation of this disease. I had my neurology nurse mention peg feeds?? which she said, we could talk about in a few months I must admit it came as a shock to me.
    apparently better to do when your well, than waiting for problem with swallowing..
    Give Mary my love and tell her to stay positive, sometimes being the patient can be very difficult, I know I hate asking!! for help, been independant up till now
    Like you Tim, always here for rant, chat or to listen
    Take care of each other
    Chebs xx

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  • chebs
    replied
    Hi Terry,
    I think I might try your idea... as I do seem to suffer with short term memory...
    Sorry to hear about your teething problems, I hate dentists!! so I will be thinking of you on the 21st though I must admit to some tooth ache myself..husband gave me some chocolate and I had some pain in back molar!!! (his fault) not rushing to the dentist yet!!!!!!
    Well take care and talk soon, at the moment just having contact with people here as feeling delicate at moment..
    Regards Chebs xx

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  • Terry
    replied
    Thanks Chris;

    There are so many things that Mnd affects, most directly but some indirectly.

    I could not control the speed and pressure of my bit reaction and sometimes they would just snap shut and damage the teeth.

    I have been sliding my feet along for years and I can't stop my right foot angling out and the big toe sticks down a little. All this and the fact that I tend to bear a lot of pressure on it when balancing and that I've lost the toes size etc means that problems are likely.

    Just two of many things that I have that would seem unrelated.

    Still toe feels better but I have not used it, shoes soon and then gym. Fingers crossed, well that's another thing with hand cramps, my fingers would rearrange themselves into shapes that normal people could never do.

    Love Terry

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