Awaiting diagnosis

Samkl

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08/2019
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Hello,

Thank you for spending your precious energies helping other people navigate this whirlwind. It's extraordinary generous, given the challenges you face.

I've been reading the forum for a few weeks now, so it's about time I introduced myself. My brother was diagnosed early August with "diffuse anterior horn cell disease". He was referred to MND clinic at a major hospital, just 10 minutes form his home. I've read enough posts here to realise he is at least lucky in this. Three weeks later, at the MND clinic, the Clinic head doctor said she was not convinced at this point that he had MND, as he did not meet the criteria. He is now doing a 3 month IVG trial, which from my reading here is a common experience prior to a firm diagnosis. I'd have to say that, even though I haven't much of clue about it all to me all the clinical ducks seem to line up for MND-ALS. For example, his EMG found no conduction block, so I'm presuming MMN is out of the equation.

I am expecting the diagnosis to be confirmed. However - a minor rant. When the initial diagnosis was made by the first neurologist, he sat down and said "Well it's MND - you've got 2 years". The doctor was sympathetic but given my brother doesn't meet the clinical criteria, I was shocked the doctor was so blunt. Where is the emotional intelligence?

Still, it is was it is, and the sooner we have that diagnosis, the sooner we can look at services for my brother. He recovered from Stage 4 throat cancer (5 years post cancer in 2016), and has 4 children at home so this has come as a terrible shock.
Thank you again for being here.
 

affected

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So sorry to see you here.
gosh may I ask which doctor said that to him? (yep I'm an aussie)
 

Samkl

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Nov 1, 2019
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Loved one DX
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08/2019
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AU
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NS
Hi Tillie,

I see you’ve lost someone. I’m so sorry. The doctor in question is in WA (I’m in NSW). That was my first post and I’m not sure enough about the protocols of the forum to divulge his name. Thank you so much for responding. We feel we’ve slipped in to a parallel universe, so unexpected and seemingly random. It’s like the world’s gone mad.

Samkl
 

lgelb

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MMN without conduction block is possible. It is hypothesized to be an axonal form. IVIG is a reasonable empiric treatment when this is suspected.

Best,
Laurie
 

Nikki J

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You are seeing a population that failed IVIG. In the MMN groups you will find a good number of people without block who are IVIG responsive. I believe block is seen in about 60 percent of MMN and 40 percent not. I hope this will be the case for him too.

we do mention doctors here. Generally we try to be factual and or positive ( prefer not Dr X is an idiot). Knowing where an opinion is coming from is often helpful to give advise. We tell people to get diagnoses confirmed by a neuromuscular specialist ( preferably 2)
 

affected

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Thanks for replying, we do reference doctors here, but as Nikki says, not by slandering. It can be helpful sometimes to ensure people are at the most appropriate help.

No one can predict how long a person with MND has, but I hope he has one of the lesser ones.

Thank you for your condolence, I lost my beloved husband to bulbar onset MND with FTD (a dementia that often accompanies ALS) in 2014. This place was a huge support for me and have become family.
 

Samkl

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08/2019
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NS
Thank you Laurie. I'm very sorry for the loss of your loved one. X
 

Samkl

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08/2019
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Thanks Nikki, I hope you are going as well as possible. You are so kind to reply. X
 

Samkl

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08/2019
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Hi Tillie,

I think he is fortunate to be under the care of Professor Needham in Perth, who has directed him to the IVIG trial, and, if he does have a definite ALS diagnosis confirmed, he has the opportunity to be part of some interesting drug trials. The multi disciplinary team seems to have hit the ground running, and he has a support/contact person from the MND Association who has been very helpful.

Maintaining weight is going to be an issue, and I've taken on board all the good advice on the forum about getting a PEG tube BEFORE you need to. He's not terribly receptive to that idea, as he had to have a PEG tube when he was having radiation for the throat cancer. I hope if he needs to, he'll change his mind. Do you mind me asking where your husband was treated? X
 

affected

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I don't mind talking about those specifics at all.
I am in the Northern Rivers - so far north coast NSW.
We were diagnosed by Dr Henderson at Royal Brisbane Hospital in Brisbane where they have a top class MND clinic.
We however found it too difficult to travel there so only went for one more clinic after diagnosis and chose to be in the care of a physician here on the north coast who has taken a huge interest in MND. He now has a clinic running in my local (little) city of Lismore which is a huge step forward for this area. His name is Robert Lodge. He was head of ICU at St Vincents in Melbourne for many years and has experience in coronary care and stroke units. We are so lucky he decided he wanted to leave the rat race and come live in paradise, as rural health can be a nightmare.
His bedside manner was such a wonderful part of our experience with him.

My Chris was rapid progression and was gone 11 months after diagnosis. He also had FTD, a type of dementia that is common with MND, and is often associated with rapid progression.

Chris lost weight right from early and wouldn't accept the peg until he was emaciated and dehydrated.

I strongly believe that CALS are there to advocate and enable whatever the PALS wish. I would have made very different decisions at times to what Chris wanted, but it was his body and his disease and I advocated for what he wanted and ensured he spent the last year of his life with as much control as this disease allows, and with as much dignity as was possible.

This isn't an easy path, and if you are in a different state it's going to be difficult. Does your brother have a partner?

We have some awesome research and trials happening in Australia. Neale Daniher has brought so much awareness and I love how he gets government dollars matching private donations with the big freeze each year. We have some brilliant minds that are doing all they can. If your brother can be part of any trials if that is how things turn out it may not help him directly but will make a difference for sure.

He is going to need a little time to see if the IVIG has an impact and then to accept things if not. You can try to get yourself up to speed in the meantime. We have some great resources here, but also don't jump too deep too fast and scare yourself too much.

Professor Needham seems to have impressive qualifications and I think will be attentive to details for your brother.
 

affected

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Oh and MND WA, from what I know talking with other CALS, are really supportive and will give him a lot of timely support and information.
It can all be a bit overwhelming, but the advisor assigned to him should be skilled at breaking it down to what is needed, when.
 

Samkl

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08/2019
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Thanks Tillie, yes he does have a partner, and he is only 10 minutes away from Professor Needham's clinic, so in the huge unluckiness of it all, I am at least grateful for that.

Neale Daniher is indeed inspirational. It would be wonderful to think a breakthrough is not far off. Everyone involved in the research seems to be quietly excited about CU(II) Atsm and the results if the Phase 1 trial. Also the Lighthouse (Triumeq) and TEALS (Tecfidera, I think) investigations are also interesting. We shall see.

I think your signature shows you lost your beloved in April 2014. How generous you are to be here still supporting.
Btw, I hope you are well away from fire areas today! Take care X
 

affected

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He and his partner may benefit from joining here too at some point when they are ready.

I'm in the thick of the fires, it's beyond belief :(
 

Samkl

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I have suggested it but they are not ready to join the forum at this point. I hope they do - I've found it very helpful.

Are you likely to have to evacuate? We're on the Central Coast so it's not quite so dire here, but it looks atrocious up your way !!
 

affected

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Oh definitely only when/if they are ready. You can glean for them in the meantime.

I haven't had to evacuate, but some areas have done and I have friends who look like they will lose their homes.
Tomorrow is going to be a shocker, state of emergency declared and 'catastrophic' weather predicted for areas down a bit more south of here. We are just kind of reeling.
 
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