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Thread: My wife is dying and nobody can help

  1. #1
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    My wife is dying and nobody can help

    Last year(2018) in January after long term(6years) with als my wife’s mother has passed away(no respiratory, no peg).
    My wife Anna (36 years old) was very closed to her mum and was hit very hard by her illness and death.
    In February Anna started to notice tingling sensation and cramps in her arms, but they were gone after 3-4 weeks.
    In April she joined the gym. Anna has never before attended any gym or done any physical exercises.
    In May Anna started to develop nettle-rash like spots on her face, neck line and hands. The rash tended to disappear after 15 min.
    In June Anna had a bicycle accident in which she hit her head. After that she’s had a very bad head ache for 2-3 days.
    The nettle-rash appeared again and Anna had a bioresonance therapy done. In the result she was diagnosed with borreliosis, chlamydia, mycoplasma, HPV human papilloma virus, herpes

    progenitalis, irritable bowel syndrome and many more.
    Anna had a nervous breakdown and wouldn’t stop crying for few days.
    My wife is a pessimist person and suffers from anxiety but also she love healthy life style, healthy eating.
    Anna and I went for consultation with a specialist who is also a member of ILADS.
    We have been told that if there are no usual symptoms of disease there is no need for any medical treatment.
    Anna had a test done for any autoimmune disease which came out positive.
    We went to see yet another borreliosis specialist. Once again we have been told to leave it alone, that Anna should calm down, relax because it is all in her head and she has an early

    stage of depression.
    By the end of July Anna started to notice shaking in her legs and arms.
    On 20th August we went for another consultation with specialist Neurologist who confirmed what we have been told before, that my wife should relax but also confirmed some somatic diseases.
    On 15th September we had a consultation with another Neurologist. This time he confirmed that it might be a neurological disease also possible Amyotrophic Lateral Sclerosis. Also muscular

    dystrophy was confirmed as Anna was unable to move her fingers in her left hand.
    At the beginning of October Anna had ENG and EMG test done. It confirmed that she has nerve damage in both her arms and left leg. No damage in her spine, no motor neurons damaged.
    She also had MRI scan done which didn’t show anything alarming.
    I’m trying to explain to Anna that it may not be ALS. One of polish best Neurologist has ruled out any neurological disease but confirmed like other ALS specialist that it is all created

    in Anna’s head.
    Since Christmas Anna has had a physiotherapy and now she can move her fingers and she has rebuilt muscles in her hand.
    In October 2018 if taking the supplements (1g B3 niacin) she had a niacin flush and after that her speech got worst also her walking and she has less feeling in her arms. Anna’s health is

    deteriorating very fast.
    Also we have been trying for a baby for 6 years but with no results. We had all fertility test done but all came out good.

    We are trying to lead a healthy life and eat organic food. We avoid gluten, dairy produce and pork.
    My wife always suffered from anxiety attacks. She has a fear of flying, fear of driving.
    Anna is a lawyer and has her own practice. She loves her job, but was always anxious to take any complicated cases and used to wake up during the night with panic attacks just to check if

    all paperwork was correct.
    She has developed obsessive compulsive disorder ( OCD ), especially cleaning, but a as child she was very messy.

    Two years ago she was diagnosed with myoma. The cyst was 70mm big. She was advised to have it removed but because of her health we decided to not to go with it.
    Anna was convinced she would die and started more often talking about death.
    Last year she had a vaginal fungal infection. It lasted around 2-3 weeks.

    In February this year in hospital they did all tests and all motors neuron damaged, pyramid symptoms and bulbar.
    End of April she got pneumonia and went to hospital, she was in induced coma and intubated. Now she can not breathe alone by the invasive tracheostomy respirator. She lost memory and she doesn't remember anything after holiday last year when got first symptomps. Now she can't move a finger in hand or legs, just blink eyes.

    Anybody now a rapid case like that? After parent died and immediately child gets the als symptoms? Please help me

    Summary:
    the first symptoms July 2018,

    October 2018, anyone motor neurons damaged

    February 2019, all 3 neurons damaged with reinversions, bulbar, gm1 and gq1b antibodies positive in igm, blood csf barrier disorder

    June 2019, just emg test, confirmed als strong without any reinversions
    Last edited by rafiksq; 25th June 2019 at 00:09.

  2. #2
    Forum Member Terry's Avatar
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    Hi rafiksq and welcome to the forum,

    I don't know what to say without blaspheming. You and your wife have been through a lot in the last couple of years.

    I must say that it is unusual to lose finger movement and then regain it and build up muscles.

    I hope Anna is comfortable and can communicate some way.

    My Mnd is quite a slow type but sometimes it can as fast as Anna's.

    Sorry, not much help.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member Gillette's Avatar
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    Hi Rafiksq and welcome to the forum. I'm afraid I don't know enough about MND to be able to make any useful comment about your wife's condition but I sincerely hope that someone will be able to help. It has been such a difficult time for you both and I imagine you are feeling desperate. I send my best wishes that someone will be able to help you soon.
    Dina


    Trying to keep positive, but not always managing.

  4. #4
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    Thank you for yours comment, is it possible to send my wife's tests to neurology from mayo clinic for another opinion? Somebody knows any doctor from Mayo who can see tests , of course, for a fee. In Poland als disease is difficult to diagnose. If umn and lmn damaged it's just als no any another disease.

  5. #5
    Forum Member Ellie's Avatar
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    Rafik, I am truly sorry for your wife's diagnosis and for what you're both going through.

    This Forum is UK based, so you may not get an answer to your Mayo Clinic question.

    I honestly don't know if anyone can add to the information you've already received on the other forums on which you posted, I know I can't.

    Best wishes.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #6
    Forum Member Lynne K's Avatar
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    Hi Rafiksq, I'm sorry about your wifes difficult years and that ALS has been hanging over her head since her mum passed with it. She could have asked for genetic testing to at least rule out or confirm that she carries a gene fault that can lead to ALS. I'm sorry that she's in such a difficult position at the moment. I too hope that she will be able to communicate one way or the another. I'm sorry that I have no experience of nor heard of those set of symptoms, the way and the time they presented. I don't know what to suggest. But I hope that you will find answers soon. There are lots and lots of undiagnosed diseases in the world, many neurological. The researchers are making headway but unfortunately not quick enough for your wife by the look of it. I hope that things improve. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  7. #7
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    Sorry, I thought it's american forum.

    Is it possible to get negative(no motor neuron damage) test eng and emg when it's problem with hands and legs?

    And after 3 months later get test with all motor neurons damaged and bulbar?

    Anyone knows a young case with FTD ?

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