PLS experiences please?

[Helen82]

Hi everyone. I've just joined the forum for advice and support to help me to support my mum. I'll not go too much into the background story, I don't think it's fair when it's not my story to tell. But I was hoping to hear from others that had been diagnosed with PLS? Mum recently got her EMG results which said that it did not look like ALS but results were 'not inconsistent' with the working diagnosis of PLS that we've had for a while. What I'm confused about is whether this ties in with the typical progression rate of PLS? Mum was fit and well in March of last year but now has multiple problems including very limited use of her hands and legs, swallowing problems and slurred speech. Would you say it was typical for the MND to have progressed this far in just over a year with PLS? Sorry for the bombardment of questions, we've been lost and overwhlemed for quite some time now. Thank you for reading :-)

[Gillette]

Hi, Helen and welcome to the forum. Sorry about your Mum's diagnosis - it is obviously very difficult for you all.

I'm afraid I can't help with your questions about PLS but there are other members who will gladly share their knowledge and experience with you. Please don't worry about asking questions: we understand. We are all on an MND journey and we help, support and encourage each other. This is a friendly and safe place to be.

Although I can't help with information, I can send virtual hugs. (((((()))))

[Ellie]

Hi Helen.

Sorry to hear about your mum's diagnosis.

I don't have PLS, I have ALS, but I agree with you wondering about the working diagnosis of PLS.

Your mum's progression seems both too fast and too widespread to be typically PLS, but obviously the EMG results are inconsistent with ALS. Whilst ALS progression varies wildly, PLS tends to follow a somewhat recognisable path of progression.

Is her Neurologist an MND specialist? If not, I'd suggest going to an MND Care Centre/Clinic for a 2nd opinion.

Love Ellie.

[Lynne K]

Hi Helen, welcome to our forums. You have certainly come to the right place for help, advice and support. I'm sorry about your mums more rapid decline than expected since last March. I've read about PLS but don't know enough to be able to respond to your queries. I hope that somebody with PLS on these forums will add their knowledge. But I expect that they'll tell you that like ALS everybody's journey is different. We have periods of no or hardly any apparent decline, slow decline periods and relatively rapid decline periods. I'm still eating speaking and mobilising with a walker indoors. I recently started using a wheelchair outside. My overall decline seems slower than some, or dare I say most, but it's still ALS. We can start with one variant of MND being diagnosed and then later the diagnosis can be changed to another variant. As yet nobody can answer why anybody gets a particular variant, or why some decline slowly and others very fast. I read every bit of research that I can get my hands on. Maybe you'll become the same.

I hope that your mums decline slows down. Ellie's idea of getting a second opinion from an MND Clinic is a good one. Maybe it'd be a good idea for your mum to speak with her GP if she is able to, to get a referal. Or, you do so for her if she's authorised you to speak on her behalf. I too send you electronic hugs. Take care. Lynne

[Terry]

Hi Helen and welcome to the forum ;

I have mainly PLS and their are quite a few of us on the forum.

It did affect the areas that you have mentioned within two years but not to a great extent. I did use a walker but still drove and had good hand movement and reasonable swallowing.

Best wishes, Terry

[Helen82]

Thank you for your replies. This forum has been really helpful because we've just been in a bubble with it all and trying to figure out what's going on step by step. Think I read somewhere that you'll never get a step in front of MND and my lord does that feel spot on! She has her neurologist appt at the end of the month and the macmillan nurse had recommended referring on to the MND specialist too so I'll bring this up. Mum is going to go to the local support group at the end of August and I'm going to go to a carers one. Hoping it will be helpful to step out of the bubble!

[Terry]

Hi Helen;

Hospices are normally good places for us to get help and support. I think that you can refree your mum yourself and they also try to help the carer as well.

You can see where the local Mnda branch is and perhaps go to a meeting.

Love Terry