Unexpected Diagnosis

[Mumsie]

Hi thanks for accepting me on this forum.
I hope I am posting in the right place
I live in Australia and I am a mum of 5 lovely children and a registered nurse and emergency ambulance officer by profession.

My story is one of suprise and shock.

Over last year or so I was having increasing difficulty moving my right foot and thought it was arthritis and a possible bunion developing. As it was beginning to affect walking due to severe cramping, I went to an orthopaedic specialist who seemed to get into a bit of a panic....and he said I had spasticity and drop foot . I was referred urgently to neurology. The neurologist also picked up on right leg weakness, tongue fasiculations, slight drooling, weight loss and severe fatigue. I had seen my GP on a number of occasions for overwhelming fatigue with no real outcome....I thought I might be anaemic or deficient in something else.

An MRI ruled out MS and any masses etc So MND given as the likely diagnosis
Nerve conduction studies were also done....the examiner didnt share much of the results except to say my right leg was noisy on EMG. I see the neurologist again mid july.

Over the past few weeks my left foot has aldo started cramping and has reduced movement
This has made things rather tricky at times with mobility especially going down steps and with balance.

Its all very early.....and all rather a suprise.
So Im hoping access to this forum will be a really mutually supportive experience

Thanks

 

[lgelb]

I'm sorry to hear this news, Mumsie. Give yourself time to process before you make any major decisions, and we're here for any question, big or small. If the cramps are threatening your balance, you might consider a cane or rollator, and avoid stairs.

 

[Mumsie]

Thank you Igelb
Much appreciated....Im sure I will have many questions to ask.

 

[Mumsie]

I have spent time reading through many posts on the forum and have found them helpful, interesting and quite scary.

At this early stage I have very little movement in my right foot and lessening movement in my left foot. Coming to terms with the fact that this wont get better and that things will get worse is very hard to comprehend.

I am interested in hearing tips on how to cope and plan ahead

Thanks

 

[Nikki J]

I am sorry you have to be here.

There is the resource subforum which might be worth looking over and reading in small chunks Resources

Planning is important but so is living in the moment. You are right now in shock and processing. It is a hard time even if expected - worse if not.

Things that are usually prioritized- a second opinion and genetic testing. Genetic testing because even those without family history can have genetic mutations and right now there is ameliorating treatment for one It works best given early. This mutation is 1-2% of those without family history so a long shot

Getting affairs in order early is also recommended so it is done. As someone with five children working in ems you may have already done so but at least review

You don’t know yet what progression will be. It isn’t always linear it is vital to stay ahead of it. Being proactive is good If something is just starting to be difficult find a solution.

DO NOT FALL! Injuries can really be devastating and injuries don’t heal as they did before

Do not forget to stop living and making memories. There is life after ALS

 

[drewidia]

Mumsie, sorry you are here, but welcome.

Get your Neuro to get you into an orthotist (I think that what you call them in AU) and get a Ankle-Foot Orthosis (AFO) it's a special kind of brace and I can tell you first hand it was a god send for my foot drop - and I went from a cane to a rollator. I had one done for my right foot and now they are making one for my left as well as a hand brace (my right side was weakest). The custom ones take a while to make but with drop foot and leg weakness they are a godsend.

I reset my living spaces to avoid stairs at all costs and I've had several falls. Most of the falls come from things no longer working (muscle groups etc) and reflexes being jacked up. You NEED to start to listen to your body around things that stop working or have trouble - forcing things is counter productive.

Start to learn to prioritize your energy use, keep up activity but DON'T overuse - it's not like when we were 18 and hit the gym to workout. Overuse is counterproductive and in my case also contributes to my falls - you hit a wall.

MND (ALS) sucks...but don't listen Dr. Google - the progression varies for everyone and I keep getting reminded lifespan is longer than they talk about. Find out what local ALS groups are around, they are great and connecting you stuff and people to talk to.

Nikki's and Igelb's guidance is spot on - take the time to process and focus on getting things in order.

Above ALL - prioritize living life and making memories in this non-linear condition.

 

[Mumsie]

Thank you so much Drewidia and Nikki J for your kind and very helpful messages. I will certainly look into the resources section. I will also seek a referral for the orthotist and enquire about genetic testing.

And thanks also for mentioning forward planning and memory making....the need to utilise "now" proactively is essential.

On reflection over the past year (before any awareness of anything neurological going on) I have fallen 3 times ....just seemed to trip over my own feet but thankfully only sustained brusing. So I will certainly heed your advise and put everything in place to reduce the risk of a fall.

Many thanks again

 

[Nikki J]

Push for orthotist if you have to. I had to ask for my afo and the orthotist told me that many patients were sent too late to get full benefit. I found mine not only improved safety but helped preserve some energy.

 

[KimT]

Hi Mumsie,

I'm glad you found this forum. Plenty of helpful people here to guide you through the challenges of MND. There is also a UK forum and I think a couple people with MND are from OZ. Facebook also has various groups, including one for travel.

The reason I brought up the UK forum is that there is a lady on there (Ellie) who has had the disease for years. Her children were young and she got diagnosed young. She has become an expert in solving problems and addressing issues from the perspective of someone who has fought the disease for many years.

It is quite shocking and scary. But as everyone knows, stay ahead of it. I'm not familiar with your health care system and wait times, but getting adaptive equipment before they are critical can help. A rollator (walker) can help you know. You also might want to consider a very light weight transport wheelchair for when you go out. We all end up needing a power wheelchair and many people also get a van that can transport the person with MND and their chair.

Once you read up more, feel free to ask questions on living quarters and any other thing that you think might help.

Take care of your mental health and let friends and family pamper you. I found that massages helped me with stress and magnesium oil plus oral magnesium helped with cramps.

 

[Mumsie]

Thank you Nikki and Igelb for the advice re mobility aids and the orthotist. I will make early contact as waiting times can be prolonged.

Thank you KimT for the information you provided. All this supportive communication has been so helpful....but has also confirmed the reality of the situation which I have been avoiding.

A quick question as I want to avoid Dr Google!!!
My hands seem okay at the moment but my arms seem to be struggling with lifting and putting jackets on etc. Would it be right to assume that this is just part of the horrible overwhelming fatigue.

Thanks again so much

 

[Nikki J]

Honestly hard to say but speaking of hands one thing to do now is a signature stamp or probably multiple. Your legal name, your sual first name, love, first name and also titles mumsie, auntie etc

Also once you get through the first weeks record you voice. I am very impressed with eleven labs who can clone your voice without a lot of recording. I believe you can get a free license with a diagnosis through the Scott Morgan Foundation as a non US resident. This isn’t an issue yet but it is lots easier before and I think extra important since you have kids

 

[lgelb]

Unfortunately, arm weakness (sometimes starting around the shoulder but not always) may precede hand weakness, so it may not be something you can chalk up to general fatigue. You may want to start looking at ways to adapt your existing clothing and/or buy some adaptive items, dressing in lighter stretchy layers, etc. The same idea would be true for parcels, groceries, and the like -- less weight and leverage needed for each item.

More ideas here: Useful Aids | ALS Guidance

 

[Mumsie]

Thank you Nikki. Thats such valuable information and something definately to get into action early.....although its hard to think about right now .

 

[Mumsie]

Whoops sorry I posted the last post before I finished writing. The signature stamps and voice recordings such essential things for mid and later stages. Thank you for letting me know about this Nikki. I will look into what resourses are available here.

Igelb, thank you for your information. I think my arm issues may indeed stem from my shoulders. My range of movement is limited. Also there is a degree of pain which I had assumed to be bursitis. I was going to get some imaging but then the neuro stuff took over. And certainly lighter stretchy layers are a good idea.

Its a bit of a roller coaster of thoughts at the moment.