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Thread: MS Diagnosis

  1. #21
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    Re: MS Diagnosis

    I hope you were satisfied with how things went, hanshan. I'm sure there was a lot to take in.

  2. #22
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    Re: MS Diagnosis

    Hi Pulisa - Sorry to be a bit slow in getting back. As you said, lots to take in, which takes a few days to digest. I spent some time with the registrar, as she took a history and did various neurological tests (strength, coordination, reflexes, sensation, and eye movement are ones I remember), then a short introduction to the head of the unit and to the specialist nurse, both of whom I will be spending more time with at a later date.

    She has organised for more tests to be done - a lumbar puncture to take cerebrospinal fluid for analysis and an eye test. I already have a diagnosis from a specialist in the field of MS, but I suppose they feel they have to add their bit to the diagnosis! The appointment dates for the lumbar puncture and eye test arrived in the mail today - the lumbar puncture is not until the 8th August, so some more waiting. Hopefully then I can discuss treatment and things like lifestyle adjustments. I'm getting around okay at the moment, but for example I have to be very careful getting in and out of the bathtub, and hanging clothes out to dry on the clothesline in summer under a hot Australian sun can feel like climbing Mount Everest.

    Nevertheless, I like to keep a positive attitude, and I am even thinking of ways I can do some overseas travel, so long as I do it in the cooler months and have mobility adjustments in place. I'm doing some Chinese language study at the moment, and would love to have the chance to visit China and see more than Hong Kong.

  3. #23
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    Re: MS Diagnosis

    There's absolutely no reason why you shouldn't plan for this, Hanshan. I'm sure the MS team will be able to advise you on this when the time is right for you to travel to China and Hong Kong. I admire you for your ability to study Chinese-I'm a linguist but only in the easier languages (I do have an "O" level in Swahili for my sins though!)

    I've had a lumbar puncture and can remember having to lie still for 4 hours afterwards to prevent a headache. Also evoked potential tests but I expect you have been through all that already. As you say, I'm sure the MS team have to make absolutely sure that you have a diagnosis of MS and this involves a battery of specific tests. I always thought that a lumbar puncture was essential for a diagnosis but maybe this has changed.

    Thank you very much for updating us. I hope the Chinese language study is going well. Please take care when hanging out your washing!!

  4. #24
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    Re: MS Diagnosis

    Just wanted to wish you well Hanshan, you've been great support to a lot of people on here so it's heartwarming to see it being returned to you in kind.

    As you say, there's plenty of treatments to slow the progress and research is being done all the time so who knows what the future will bring?

    Not a nice diagnosis, but it could always be worse! One of my old colleagues has had MS for almost 30 years and is actually in better shape than I am, so it's not the be all end all!
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  5. #25

    Re: MS Diagnosis

    Hanshan,

    Just a quick message to let you know my mum has had MS for years now and she handles it really well. She still works as a tour guide so she's on her feet all day and she does absolutely everything she wants to do. She's planning on travelling to S E Asia with me in December/ January and it really doesn't affect her life. She doesn't take any meds, but what she does do is pilates, she eats a mainly vegan diet, she does meditation and she maintains a very positive outlook. I'd really recommend following some of the same procedures. Good luck with everything!

  6. #26
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    Re: MS Diagnosis

    Hanshan,

    I woman from my city walked the London Marathon on crutches this year. She has MS. Prior to this she has also completed the Potteries 'Arf Marathon in her wheelchair. So, I believe if you want to do it, you will because you have a positive mental attitude and that's half the battle with anything. Maybe you will walk the wall?

    Are you getting any support from peer groups? Maybe they can give you some ideas about what you can achieve and what allowances you may need to make to pass you goals?

    You are one of the most respected members on here in my eyes and as such I'm sure many of us will be around if you need us.
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  7. #27
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    Re: MS Diagnosis

    Hi guys thanks for your messages of support. Usually when I wake up is the trickiest time, when I have to reset my mind to the new reality. Pulisa I definitely wont be trying Swahili! I have a secret weapon with Chinese in that Ive had exposure to the characters in Japanese. Its weird that when Im reading Chinese the sound comes out in Chinese, but the same character comes out in Japanese when Im reading Japanese. Im also not looking forward to the lumbar puncture...

    Mindprison the research is amazing. Almost every day brings something new, and I think they are getting close to being able to stop the progression of the illness and repair the myelin on damaged nerves.

    Claire92 the pilates and vegan diet are good ideas. I get spasticity in the legs, and they need stretching. Ive also read a recommended diet that avoids most products from land animals (including dairy), but does include fish and seafood.

    And Terry a marathon on crutches, maybe not for me! Ive only made indirect contact with peer groups by accessing their websites. However, Ive been recommended to directly contact the Australian group as they can organise help through the Australian National Disability Insurance Scheme (NDIS).

    More letters have arrived in the mail one with an appointment for a follow-up MRI to add to the other tests, and another saying Ive been prescribed Ocrevus. This is the latest and probably best medication for slowing the progressive form of MS that I have with no guarantees, however. It has to be administered through a drip infusion that takes several hours. Im just glad to be in Australia and now being treated in the public hospital system, because I know I will get good care, and not have to worry about medical bills there are none! The thought of the medical tests does give me a bit of what Fishmanpa calls scanxiety, though.

  8. #28
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    Re: MS Diagnosis

    I just wanted to say that I didn't have any issues with the lumbar puncture and I had no subsequent headache whatsoever. I just remember being told to lie on the bed for 4 hours following the procedure which obviously worked.

    Hospital tests and scans are anxiety-inducing even with those who say they are laid back about such things. It's good that you won't have to be paying out a small fortune to undergo them because this must put enormous pressure on the average person's finances when they are at their most vulnerable.

    I know you haven't got any choice in the matter but you seem to have a very measured approach to the diagnosis and your positivity will be very much to your advantage. I do hope the Ocrevus fulfils its potential but I know there are no guarantees..at least you have been given the opportunity to give it a try.

    Every good wish to you, hanshan. I do hope that the coming weeks aren't too stressful and that you get as much help and support from the professionals and from those around you as possible.

  9. #29
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    Re: MS Diagnosis

    Quote Originally Posted by hanshan View Post
    I get spasticity in the legs, and they need stretching.

    This is the latest and probably best medication for slowing the progressive form of MS that I have –
    Sorry to hear that you have the "progressive" form of MS, Hanshan, and sincerely hope that this new med helps. Keep us updated.

    I was also wondering when the "spasticity" you mention first started, because for a long time you only appeared to have the usual symptoms we all associate with panic/anxiety disorder.
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  10. #30
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    Re: MS Diagnosis

    Hi KK77 - It's a roundabout way that I came to where I am today. I had an episode of facial tingling and numbness maybe fifteen years ago, but it resolved completely without any treatment, and I thought at the time it was something like a pinched nerve or neuralgia. But it is likely that it was the first episode of MS.

    From around 2010 I found it was getting increasingly difficult walking distances or staying on my feet for a long time, but I'm talking distances more than a kilometre or standing for the last half hour of a ninety minute class that I was teaching. I thought I was just getting out of condition, and I needed to exercise more, but for all intents and purposes I was getting around normally, except climbing stairs was increasingly difficult, and I would usually take the lift, if possible.

    In late 2015, I was standing at the kitchen sink, bouncing up and down on the balls of my feet to try and build up my leg strength when I tore about a 60% cross section of my left Achilles tendon, but still with some movement in the foot. I struggled about, and it wasn't until mid-2016 that it was surgically repaired. Around 4 cm of scarred tendon was removed and the ends rejoined. The end result was that I was getting around on a crutch with both legs weakened, but the left leg weaker than the right.

    I had hoped that I would recuperate and would get back to walking normally, but I never have - I'm still going around the house off-balance and using the crutch when I go out. I started wondering why I wasn't getting better. But adding in other symptoms that I was having, like electric shock sensations when I bent my neck, and bowel and bladder problems, I thought maybe there was also some neurological problem. This led to various scans and tests, including MRIs, and the diagnosis of MS about two months ago. But from 2015 on I was telling people I had a tendon injury, even when I suspected there was something more.

    Because moving around is difficult, the easiest thing to do is to just sit down most of the time, but that's where the spasticity comes in. The legs have to be exercised and stretched, otherwise they seize up, so I force myself to move around every day. Still, I feel that I need to do more!
    Last edited by hanshan; 11-07-18 at 16:06.

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