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Lily1967

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May 23, 2015
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Country
AUS
State
VICTORIA
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MELBOURNE
Hi everyone,
I am new here and am really sorry that you need to be on this site as it means you have this horrible illness and my heart goes out to you all.

I have been sick now for nearly 2 years, firstly suspected fibromyalgia, then MS. MS is a possibility but I don't show any lesions so the neurologist will not diagnose me with it. On my last visit, he noticed my symptoms are getting worse and that I will have to wait until July to have another MRI. He was very busy that day and as the appointment was coming to an end I asked him what he was thinking.....he quickly said you have upper motor neurone damage without doubt. I was running over time and didn't question it.

Now I have come home and tried to find out what that exactly means.

So my question is does anybody know does damage equal motor neurone disease?
or can damage just be damage unrelated to MND? Can this damage he is talking about still
be MS? He has told me various times that he will need to monitor my condition and is unsure of what it is.

Has anybody experienced this?

I am really sorry to drag it out, but I can't get an earlier appointment with him and am
concerned.

I hate coming to a site like this because I know you all have so much on your plates already.

Thank you for reading.
 
Lily, hi.
Our paths seem so similar. I'm seeing prof Matthew Kiernan in Sydney (I'm from WA). Next appointment is September. still waiting for final diagnosis, so I feel your pain.
Can your GP refer you to another Neuro to see if things can go quicker?
In saying that, it's very nearly June...July is not far away.
Keep busy, read, clean (ugh), coffee with friends...whatever it takes to keep you occupied.
Please, keep us posted.
God bless, Janelle x
 
Briefly yes. There are other causes of upper motor neuron syndrome besides MND including MS. Can you call or email your doctor and ask what is still in your differential diagnosis? If he is pursuing another MRI after a negative one rather than an EMG it seems he is still thinking MS is possible rather than leaning towards MND
 
Thank you Nikki, I looked everywhere to find the answer but nothing was straight forward. I am so sorry you and so many members of your family have been/are affected by this awful disease. I hope you are well considering the circumstances.
 
Thank you Nikki, I am in Melbourne. I know its not long to wait but can't find any answers, no direct ones anyway. I feel for you, keep in touch and let me know how you go. In a hurry at the moment but will get back to you. Stay strong.
 
Lily, hi.
Our paths seem so similar. I'm seeing prof Matthew Kiernan in Sydney (I'm from WA). Next appointment is September. still waiting for final diagnosis, so I feel your pain.
Can your GP refer you to another Neuro to see if things can go quicker?
In saying that, it's very nearly June...July is not far away.
Keep busy, read, clean (ugh), coffee with friends...whatever it takes to keep you occupied.
Please, keep us posted.
God bless, Janelle x
Hi Green Queen,
I think I replied to your message to somebody else! So anyway, thank you for getting back to me. I don't think its a matter of moving things along, my neurologist just says its a matter of keeping an eye on it, see what happens....what shows or doesn't show! I am just confused about the terminology they use, I am being called undiagnosed but have upper motor neurone damage? so what does he think that is, or could be? what do they wait for? how long do they wait for? so many questions and no answers, so maybe they cant as yet put a name to it but what is it that they monitoring or looking out for? Sorry to rant but I don't know if maybe you're going through the same. They don't rule out anything but they don't point at what it may be........Keep in touch please, I hope your next appointment brings you good news.
 
Lily ALS involves upper and lower motor neurone involvement.
PLS only upper.
It takes 3 - 5 years to diagnose PLS in the US, probably close to that in Australia.

So they do rule out everything else, then wait and see.

In the meantime you should live all you can and see what if anything unfolds. Believe me it took a long time to diagnose my Chris and we thought the waiting was torture. The diagnosis was far worse. While we waited we lived and just kept going. After diagnosis life changed and he turned out to be rapid progression.

So, write out carefully your questions and take them on the next visit and hand the sheet to your doctor and say you really hope to have these questions answered clearly today. Nikki suggested you could even contact your doctor maybe by email in the meantime. These are the best ideas as we can't play the guessing game, we know ALS or MND very well but there are so many other things it could be so only your doctor can really work with you on that.

All the best
 
Hi lily, I knew you meant me so all good!
I'm hearing you about the terminology, if it was easier to understand I don't think I'd be so worried.
I talked to my GP the other day about a letter he'd received from the Sydney professor. I am waiting to be diagnosed with either PLS or Mills Syndrome. When Wayne (my husband) and I were in Sydney they were leaning towards Mills. Now, this letter states they still don't know, and HOPE they can tell me more in September.
Yes, my GP then said 'time will tell'.
As Tillie said, they rule everything else out and go from there. I'm believe having an actual diagnosis is bittersweet, so even though I want confirmation, I know the tears, rage, grief...all of it...will rear it's ugly head again, if in fact it has ever been quiet.
As to how long, well, how long is a piece of string, I guess? One doctor in Sydney (we saw three) said to me, I may just be one of the lucky few that there is no answer for. I was actually quite content with that, would have stopped the merry go round we are on.
Lily, I think we are kindred spirits!
Yes, please stay in touch.
God bless, Janelle x
 
Hi Janelle,
I tried to look up Mills disease but like everything else its hard to find exactly what it is and the prognosis.
I hope you have the lesser of the two evils, hopefully like your doctor said you may be one of the unexplained.
I was told that too, you have some sort of upper motor neurone damage, don't know what but we may never put a name to it. Which is fantastic to know that you don't have any of these horrible diseases, however, not knowing what it is or the fact they haven't put a name to it doesn't make it any easier. I feel myself getting worse, if I knew what I had then there would be a prognosis of what may happen but this way there is no way of knowing what may happen. I just live day to day and make the most of it.........
Sending you love and lots of luck.
 
Dear Tillie,
Thank you so much for your reply and so sorry to hear about your Chris, my heart goes out to you and your family. What you said has helped me and it makes sense what you said about 3-5 years, my neurologist said it maybe some years before he can put a name to it, if ever. However, is it usual for doctors not to tell you that is what they are looking at/waiting for? He has never given me any indication of MND except that very quick comment at my last visit, I have been seeing him for 18 months. I was totally unprepared last appointment.
Lilyxo
 
Hello to another Aussie, welcome, the waiting game is so hard. My Darling was diagnosed in 6 weeks so we were very lucky with a quick result.
Love Gem
 
Hi Gem,
I am so sorry that someone you love has been diagnosed with this. One of of our closest friends is the founder of ALS foundation in Qld so I knew about it. He formed it to raise awareness of this horrible disease as his mother died from it. What I never knew, however, is how many people are affected by it, especially in Australia! Thank goodness that there is such a campaign at the moment to raise awareness of it, maybe and hopefully many lives will be saved in the near future with more research. I wish you and your 'Darling' all the best.
Love
Lily
 
Thanks Lily, my Darling is my husband BJ, we are now waiting on some genetic testing results to see if his MND is familial or sparotic, we might have the results back next week when we visit his specialist.
Love Gem
 
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