Foot drop and more EMG tests

[michelleroberts]

I got my "official" diagnosis yesterday from the MND/ALS clinic at Leeds. Although I was expecting the diagnosis it still came as a shock to hear it.
My symptoms began in 2021 with a limp and then foot drop and now I am walking around the house with a walker and outside I need a wheelchair.
At the moment it is mainly my legs although my arms do have clinical weakness.
Three EMG tests and two NCS tests helped with the diagnosis.
I am trying to stay as positive as is possible and look forward to help. tips and advice from this lovely group - thank you for letting me join xx

 

[lgelb]

I'm very sorry, Michelle. We will support you however we can.

It is always a shock however much you suspect. Give yourself time to process before making any major decisions.

Best,
Laurie

 

[Nikki J]

I am so sorry. I was hoping for a different answer for you. When you are ready hop on over to the main subforums

 

[Bestfriends14]

I'm so sorry, Michelle. Please ask questions of the supportive folks on this forum. They're knowledgeable and a good source of information. Hugs to you.

 

[affected]

Oh I really hoped we wouldn't be welcoming you over, but you have our support. Take your time processing this now.

 

[KimT]

I'm so sorry, Michelle. Waiting that long for a diagnosis is brutal. I hope you have slow progression and you gather together a good support system.

 

[michelleroberts]

Thank you all for your kind replies xx

 

[MupstateNY]

Sorry to hear it. I can personally relate to your dx journey.

I hope you find this forum as helpful as I have.

May I make some suggestions, for whenever you feel ready? (Please don't feel you need to even read this yet!)

1. Can you download the office notes from your provider's portal? If not, you may want to send a message and ask that they send them to you as an attachment to a portal message, through an encrypted email, or through the post.

2. I hope they have a plan for starting you on ALS specialty meds soon. Mine were started one at a time, Riluzole first, then Edaravone, then Relyvrio. Things may be a bit different where you live.

3. I was sent for a hepatic panel before starting Riluzole, and then repeated monthly after starting, bc this med can be hard on the liver.

4. Can you start physical therapy soon? Hopefully your gp could set this up. Range of motion exercises are often suggested for ALS.

5. Can you get foot braces (AFOs) soon? YourALSGuide website has videos about various orthotics. I had to show them to my providers bc I don't live in a major population area.

6. Have you figured out what organizations will provide support in your area? Hopefully someone from the UK will be responding shortly.