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Thread: Possible MND diagnosis

  1. #11
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    Hi all,

    So my partner saw a hand specialist this week, she said she was confident that the median nerve in his wrist had been crushed and that was causing the weakness and atrophy in his hand. I know this should be positive news but I can’t help but worry still. What if she’s wrong , I know that’s terrible as she’s the specialist! I’ve read so many stories of misdiagnosis. He didn’t have any tests but she gave him wrist exercises to do and wants to see him in 6 weeks.

    I just can’t stop worrying. His ankle is just the same.

    Fiona

  2. #12
    Forum Member Kayleigh's Avatar
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    Hello Fiona,

    I am sorry to hear that you and your partner are still worried, even after getting the hand specialist's opinion. Hopefully, she will be able to give you further re-assurance at the appointment in 6 weeks time.

    If it was me, I would probably take the specialist's advice and do the recommended exercises before the next appointment, and then take things from there. It is up to your partner though, if he wants to get a second opinion from another specialist (but presumably this might need to be paid for privately, if not available on the NHS).

    I recall from your posts in December that your partner's GP was considering a referral to a neurologist, but was waiting to receive his MRI results. Hopefully the GP will receive the results soon (if not received already), so that your partner can find out if a referral to a neurologist is necessary.

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 24th January 2019 at 13:59.

  3. #13
    Forum Member MNDConnect's Avatar
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    Dear Fiona,

    I can understand why you are not completely reassured by the diagnosis from the hand specialist, you feel that there are still unexplained questions and the problems with his ankle are still causing your partner concern.

    As has already been suggested your partner should carry out the exercises suggested by the hand specialist, but if his hand has not improved at the end of the recommended time a referral to a neurologist should be requested.

    If your partner would rather not wait until the six weeks have passed he can ask for a referral to a neurologist. A referral to a neurologist is needed from the GP whether it is for an NHS appointment or a private appointment.

    He would probably benefit from seeing a specialist MND neurologist at an MND Care centre clinic if possible, a specialist would be more able to reassure you both as to whether his symptoms are caused by MND or not.
    If you would be able to let us know where you are in the country we would be able to advise you of the contact details for an MND Care Centre near to where you live. Private appointments are also offered at some of the care centres.

    If the neurologist is concerned he would refer your partner for tests such as an EMG and/or nerve conduction tests which look at how nerve signals are being sent and received by the muscles. These tests should indicate if there are any problems with this process.

    If you have any questions please do not hesitate to ask.

    With kind regards
    Jacqui
    Senior MND Connect Adviser

  4. #14
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    Thank you both for replying. He is doing the exercises and has done so religiously since he saw the hand specialist, I think he’s relived someone has given him something to try as everyone else has just referred him on. He said she was very confident.

    He has a neurology appointment booked for March. His mri and X-ray came back clear.

  5. #15
    Forum Member Kayleigh's Avatar
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    Hi Fiona,

    It's good to hear that your partner is doing the exercises - hopefully, there will be an improvement in his symptoms by the time he sees the hand specialist again.

    I hope that your partner's medical appointments go well.

    Best wishes,
    Kayleigh

  6. #16
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    So Iím back with updates.

    My partner saw Dr Tim Ham who said he understood his concerns considering his family history and listened carefully to his symptoms. He carried out a physical exam and said NO signs of MND but would send him for an EMG and nerve conduction study. Those both came back all clear and Dr Ham said that there was nothing else to be done but we could contact him if things got worse. A very nice man!

    So 5 months later my partner has gone back to thinking the worst. He thinks the tests were done too early or are just wrong. Is this possible? Where do I go to get support for his mental health around his own MND concerns but also to help him handle his Dad being so ill? Heís booked in to see a genetic counsellor at Addenbrookes in October.

    Thank you and love to all,

    Fiona

  7. #17
    Forum Member MNDConnect's Avatar
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    Hi Fiona

    I'm sorry to hear that your partner's concerns have increased again. He could ask for a referral to an MND Care Centre where the team specialise in MND. This may help to alleviate his concerns regarding MND.

    Your partner's GP could refer him to his local counselling services so that he can talk to someone. He would also be very welcome to contact us here at the helpline if it would help to talk through his concerns.

    Have your partner's symptoms gotten worse or changed in the past 5 months?

    Best Wishes

    Rachel
    MND Connect Adviser

  8. #18
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    Thank you, I think talking to someone, particularly about his Dad who is struggling at the moment, would help. I just wish heíd believe the neurologist he saw!

    His symptoms havenít really got significantly worse over the year since it started. Although they have changed.

  9. #19
    Forum Member MNDConnect's Avatar
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    Quote Originally Posted by Fiona89 View Post
    Thank you, I think talking to someone, particularly about his Dad who is struggling at the moment, would help. I just wish he’d believe the neurologist he saw!

    His symptoms haven’t really got significantly worse over the year since it started. Although they have changed.
    Please do feel free to suggest that he give us a call. This must be very difficult on all of you, particularly with your partner's dad being ill.
    We are available on freephone 0808 802 6262 Monday-Friday 9am-5pm.

    Best Wishes

    Rachel
    MND Connect Adviser

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