Do these symptoms point away from MND?

[AuraBlue]

Hi, I would first like to thank everyone who has given up their precious time to read or read and answer my post. I know your time is valuable and I appreciate it.

I guess I will start from where I believe is the start. About 15 months ago I noticed I was catching my right foot on stairs causing me to fall up them. Thought I was just getting clumsy however not long after I was falling over my right foot on even surfaces. I seen a physio who preformed strength tests, reflexes, gait etc. He told me I had foot drop but he also noticed significant weakness in all 4 limbs. My right side being a lot worse than the left. Normal reflexes and of course an abnormal gait but he couldn’t see me again until I had seen a neurologist.

I have been seeing neurologist since, the neurologist found clinical weakness more so in my right arm and right leg including the foot drop. He sent me for an MRI of spine and Brian did lots of bloods all come back normal. He decided to do a NCS/EMG. EMG showed denervation acute and chronic and normal NCS.

He has now referred me onto a neurophysiologist, stating he was concerned about possible MND. I’m still waiting for that appointment. In the mean time he wanted me to continue to work with my physio.

I have continued to do so however things aren’t improving. My weakness hasn’t improved it’s gotten worse, I’m now unable to lift my right leg laying down also can’t lift it to cross it over my other leg , stand on my toes or my heel. I can’t put petrol in the car as I can’t squeeze the pump etc

Physio has said I have more weakness than 12 months ago and now he said because of that weakness I have lost reflexes in my leg and some in my arm. Can no longer preform strength tests against gravity in the right leg. My arm is not as bad as my leg thankfully. I will continue to work with him in hopes I might see some improvement.

This brings me to now I went to my gp last week because I noticed when I smile I can do it but then on the right side it twitches and drops after about 3 secs of smiling. The GP said it was facial weakness. I will show the neurophysiologist at my upcoming appointment.

My two main questions are
1. My face can still move to do the smile but can’t hold it, this wouldn’t be failure would it? So does this new symptom point away from MND?

2. I don’t have hyperreflexia I only have hyporeflexia wouldnt this also point away from MND?

 

[lgelb]

I'm very sorry to hear this news, AB. Unfortunately, neither of the findings you mention really "point away" from MND. Think of it as "failure" to hold a smile, and not all people with MND have hyper reflexes. My husband had "hypo" like yours. The muscles don't have enough tone to jump up, if you will.

If you have your EMG report, feel free to post it with your details redacted.

Your reflexes aren't the same every day, and can relate to other medical conditions as well as the type of MND that you have. In some people, there is a lot more "lower motor neuron" damage that shows up as you describe, whereas some people have more upper motor neuron damage, and hyperreflexia is part of that. So if you have UMN signs + LMN signs, that is sort of "classic" ALS, but not all people show up like that, especially at the beginning. Some people have no UMN signs at diagnosis, and you could be one such.

From your description, even in the absence of a formal diagnosis, your physio should be focusing on range of motion, gentle stretching, and the like, not building muscle, which could actually make you weaker if you try to do too much. If you are not on the same page with that, I would not resume physio until you were, in consultation with your neurologist.

I'm concerned that while you're waiting for the neurophysiology appointment, you may be missing out on equipment and drug therapy that could help you. MND drugs work best when started early. Avoiding falls is especially important. So I would reach out to the MND support group in your locality, and see if they have suggestions for how things can be moved along. I would say as much to the neurologist, physio, and your GP as well and see what they can muster up.

Best,
Laurie

 

[AuraBlue]

Thank you legb,
I’m sorry to hear about your husband. Thank you for getting back to me.

I’m seeing the physio for the purpose of ‘maintaining function’ so we are doing a whole heap of ROM exercises but when I fail to preform them to my previous ability he will test the strengh and reflexes again. There hasn’t been any muscle building. He said my reflexes the way they are because of my strengh I don’t have enough to get a reflex and also I don’t have spasticity I have flaccisity.

My physio did put me into a foot brace those ones that keep the foot up however this was causing other issues and that was because I also don’t have the strength to lift up my leg at the hip to allow for that higher step when wearing those braces.

I have re read your post a few times and I agree with you I need more of a care team to move things a long quicker, I will call all 3 drs today and see if I can get an earlier appointments with any of them to get things moving quicker. At the moment I have been stuck in a maybe but do physio to try and maintain while waiting for appointments.

 

[lgelb]

Yes, flaccidity/floppiness is more LMN and spasticity is more UMN-like.