update

[Zante]

I had my second opinion recently with another mnd consultant specialist. I know some members have been disappointed with their 2nd opinion and they way it was done but I was very impressed with mine, and it was 90 mins and such a thorough clinical examination and history etc. She has confirmed mnd and explained the various types and what it means. Mine is currently upper motor neuron involvement on examination. And she said the only way to definitely know if any lmn is to have more emg repeated over the future months, and did I want to know or would I rather live each day as it comes and see how I go and that the care team and mnd clinic is still the same which ever type of mnd it is. I have decided not to have anymore emg tests. My mood is already low and I feel better not knowing. She was so patient and caring and I felt better leaving there than when I went in which was odd having had the diagnosis confirmed. I also have the prescription for tizanidine to start slowly and build up dose.

I wanted to say that I look at the forum everyday and read all the posts, and I am sorry I dont often comment with advice or solutions, and this is only because I am not at the stage a lot of members are and so I dont have experience with such difficulties. I have empathy for everyone here. I admit I feel guilty for not being as limited or "poorly" even though I have mnd. And yes I selfishly panic when I think it might be me next year etc. The consultant said each type of mnd and often each patient starts off differently but ends the same in the end. Basically in a crap way I am trying to say " I think of you all on here and I so so admire the courage and kindness and spirit of everyone, I am not very good with advice or solutions, but I think of you all and hope that we all can take some comfort that we are not alone".

[JamesW]

Hi Zante, sorry to hear that your second opinion confirmed your initial diagnosis 😔

You should not feel guilty for being in the early stages of this disease as we have all started somewhere with it on our own respective journeys. Indeed the earlier days for me were very traumatic mentally as I tried to come to terms with what I was dealing with.

Everybody also gets different things out of this forum, some of us post quite a lot and others will read and digest the information quietly in the background, it doesn’t matter how you use the forum it is there for us all.

it’s great having you around 😊

Take care,
James

[Zante]

JamesW thanks James that meant a lot. Yes the early stages are difficult mentally. And I can't believe am saying I feel guilty for being able to do a lot of things others can't.... mind u I currently have skinless knees from exercising today and having a fall on hard pavement! Cheers James. Good luck with the profile name change... they got plenty of time to move upwards in table!! Xx

[Arcadian]

Sorry to read Zante regarding second opinion confirmation.
Don't feel guilty or hold back on the forum regarding sharing what experiences and feelings you wish to - It's a journey and we are all at different stages and at times different levels of certainty or mood.
Sharing what you are comfortable with (and the associated experiences), helps others in various ways.

Thank you for reading the forum and understanding everyone else's situations - if you share this understanding and resource with just one person outside a MND diagnosis, or pragmatically understand the direction of travel for yourself, that is of some help.

[Zante]

Arcadian I agree about sharing and also educating people outside of mnd circles. My sister has been doing quite a lot of fundraising and coffee cake stalls etc for mnda and she said people were shocked when they actually learnt about mnd and the statistics and lack of medication for slowing it down etc. With the consultant we discussed the spasticity and I said when it's cold it's worse... I even notice the difference in the chilled section of supermarkets and once have reached the biscuit aisle legs return to how they were before chillers 😀 and she said everyone is different and no one has said to her it even is affected in varying degrees according to whereabouts in a supermarket! ( I was a long time deciding between fish pie or something else!). X

[denise]

Hi zante
I'm sorry about your diagnosis but I'm glad it was done in a good way.

You don't have to spout words of wisdom just know we are all in this together and to be there for each other. We don't have to know the answers or have solutions but just be there and give support. Just a hug or a few nice words.

All for one and one for all. At least we know we are all here if needed.

Love and hugs
Denise xxx

[Piglet]

Zante hope your mood improves, I’m sure it will. It is very daunting at first and feelings are of awful distressing thoughts. In time you will start to feel better. Just try to live your life as much as you can while you can, it may be ages till deterioration and that can take years.it’s lovely that you that you are using the forum and thinking of others on here. Everyone is here for everyone. Anything can be expressed, it’s a good way of venting thoughts and feelings as well as advice and support. Xx

[Zante]

denise yeah totally agree. I always read everything just struggle with answers but like people have said u don't need to know any answers and its nice to be able to come to the forum and have a quiet read and absorb info and ideas. I chuckle at Plymouth weather cos often half hour away we seem to escape some of the rain 🌧! X

[Zante]

Piglet my mood to be honest improved after seeing a consultant with bedside manner! And i think also from accepting that I don't need to know which type of mnd it is so I can stop thinking about that side of it. My hands are definitely deteriorated over last month and can't now pick up a coffee cup with small handle but can manage a mug so I just changed to always asking for a mug when out. Am sure not everything will be as easy to work around and today has been a better day mentally.
thanks for the replies everyone. Xxx

[Hope]

Zante I am sorry about your second diagnosis.

I know what you mean about feeling guilty because you do not have the same limitations as others. I feel the same. I am still fully mobile and do feel a little guilty if I post a query. However I am immensely grateful for this forum and those who reply to me. xx

[Zante]

Hope yeah its difficult isn't it. In the same way I am nervous about my first mnd clinic appointment where I shall no doubt see patients further advanced than me and I will have another wobble! And I know others here would have had that situation also in their earlier days. Its just sad that in the future we shall be the "experienced " ones to newly diagnosed and its so frustrating thinking how long will it be for mnd to be cured or seriously slowed down. X

[Claireflo]

Zante whilst I wish you had a different outcome it's good to hear there are some thorough and compassionate consultants out there. The manner in which messages are communicated is so important.

You have nothing to feel guilty for being in the early stages, I hope your progression is as slow as possible. My dad and I found the first part the hardest so far to deal with emotionally, each progression and loss (of his sports and activities even though he is still mobile, more so than his voice) was hard.

I think the forum provides different things for different people at different times. I first looked on here when Dad was diagnosed and to be honest I wasn't ready to see the reality of MND. So I came back again later and when I needed help the collective knowledge of the forum has been there and I felt welcomed even though I'm not even a full time carer. I often have little advice to offer as many queries focus around the mobility aspects, which we are not yet experiencing (although edging slightly closer I suspect) but now I find myself wondering how people's day's are going as it feels like being part of a community helping each other through.

I think you, me and denise must be fairly close, I'm 50 minutes away from Plymouth so also look at the weather reports with interest! X

[shelly21]

Zante totally agree with your decision in not wanting to know if the type changes. I agree with everyone else in please stay with us on the forum. Be yourself here and don't worry what your input is.

Much love and hugs x

[Zante]

Claireflo and shelly21 thank u both for your kind words. I agree everyone gets something different from the forum. And the support and friendship is second to none. I do feel guilty being slow progressing when I especially read such difficulties people are facing. But having the diagnosis is a battle in itself mentally as well as physical.
yes am not far from Plymouth. A small town rural I am. Plymouth is only half hour for shops and hospitals etc! Xx

[AngieCanuck]

Zante it sounds like the bedside manner of your 2nd opinion doc was much better than my 2nd opinion doc. Incidentally, my 2nd opinion doc is Maria C ’s neurologist (I have more sympathy now that I’ve experienced his quirky negativity ).
I think your progression is similar to mine. I’ve got another EMG scheduled in September (my 3rd one), and my neurologist seems to think it will show LMN degeneration, as my condition seems to be quickly progressing. I never considered just stopping the EMG’s and letting things take their course. You’ve got a good point about not knowing or knowing and how it doesn’t make a difference because it is going to be what it will be.
This disease is the pits but having you and everyone on the forum definitely makes it bearable.
Sending lots of love,
Angie 💕💕❤️