Spasticity

[LAmser]

Hi everyone,

I was diagnosed with relapse remitting MS (multiple sclerosis) in 2017. Until now, I’ve been very lucky with only some temporary blurry vision for a few weeks and other sensory symptoms (numbness and tingling predominantly in my left arm). I’ve been on Tecfidera now for a while. However, last month I started getting symptoms of spasticity in my left leg. I can still walk without an aid, but get a lot of tightness/stiffness and the occasional subtle involuntary jerk when seated. My MS neuro is considering adjusting my medication and continues to recommend exercise, lowering stress etc.

However, in Googling spasticity I realized that people with ALS also suffer from spasticity, and that it involves upper motor neuron issues? That sent me into a spiral of worry that my new symptoms could perhaps not just be attributable to MS. The logical part of my brain says no, but I think I’ve just been shaken by this new flare.

A couple of questions:

1. Is spasticity in ALS the same as spasticity in MS?

2. How do you know the cause of spasticity?

3. Am I more likely to develop ALS given my MS diagnosis?

4. For those of you with spasticity, any tips on managing it? (I will of course discuss this with my neurologist too, but just in case anyone has practical tips).

Thank you so much for your time and help.

 

[ThatBankDude]

My mom has MS. I’m sure you know that symptoms of MS are presented based on where a lesion is. New symptoms that you have not had before are most likely due to a new lesion on a part of the brain and/or spinal cord that was not there previously. The likeliness of having MS and then getting ALS is likely extremely rare.

 

[LAmser]

My mom has MS. I’m sure you know that symptoms of MS are presented based on where a lesion is. New symptoms that you have not had before are most likely due to a new lesion on a part of the brain and/or spinal cord that was not there previously. The likeliness of having MS and then getting ALS is likely extremely rare.

Thanks for your response. Yes, you are probably right.

I know there are some very knowledgeable people here, including at least one MD, so was hoping someone could explain the differences in spasticity between MS and ALS a bit more, answer my questions above, etc. I know people here are very busy and dealing with a lot, so appreciate when anyone has the time. I feel very stressed about it all, but of course realize that my issues are small compared to what others are facing.

I appreciate any responses. Thank you.

 

[KarenNWendyn]

Spasticity is a big part of MS. It’s an upper motor neuron sign, and MS affects the brain and spinal cord so it can cause upper motor neuron signs including spasticity, clonus, and hyperreflexia. I’m not sure spasticity in MS can be differentiated from spasticity in ALS, except in the context of all the symptoms taken together. Keep in mind that what is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.

Developing ALS on top of MS would be extremely rare. There are drugs to help spasticity— Baclofen and Tizanidine, to name a couple. These are all great questions for your neurologist.

 

[LAmser]

Spasticity is a big part of MS. It’s an upper motor neuron sign, and MS affects the brain and spinal cord so it can cause upper motor neuron signs including spasticity, clonus, and hyperreflexia. I’m not sure spasticity in MS can be differentiated from spasticity in ALS, except in the context of all the symptoms taken together. Keep in mind that what is important when it comes to diagnosing ALS is the big picture: clinical weakness as determined by a physician, characteristic EMG changes in multiple muscle areas, upper motor neuron signs, evidence of disease progression, and ruling out ALS mimics.

Developing ALS on top of MS would be extremely rare. There are drugs to help spasticity— Baclofen and Tizanidine, to name a couple. These are all great questions for your neurologist.

Karen, thank you so much for your thoughtful response. I think you are right; I’m not normally a person stricken by health anxiety, but I think the new twist in symptoms threw me for a loop. I was told MS can be unpredictable, but you know still shocks you when it happens.

Thanks for explaining the reason for upper motor neuron symptoms. I actually got an EMG early in the MS diagnostic process, not for purposes of ALS, but to rule out a neuropathy etc. EMG was totally normal and then of course MRI showed lesions. I messaged my neuro regarding an EMG, and she replied that it was unnecessary. I’ve never had any weakness, perceived or clinical, but I understand that can occur in MS as well?

Thanks for the medication tips. I will discuss at next spot.

 

[ShiftKicker]

Hi there- the folk here really do focus on ALS, as this is a forum designed to support those with ALS and their caregivers. MS is an entirely different condition, with difference processes, constellation of symptoms and issues- even if there are some similar symptoms with ALS. Your best bet is to find a group- either on FB or via another MS focused forum to ask questions specific to MS. You will find way more knowledgeable and experienced support from those who understand the ins and outs of Multiple Sclerosis and who will be able to provide answers that pertain to your diagnosis.

All the best-

 

[LAmser]

Thanks Shiftkicker. Completely understand; I apologize if I unduly used your resources here. I will direct my MS questions to MS forums. My main reason for coming here was to rule out ALS worries.

I absolutely understand that it would be rare to get both diseases, but of course Google delivered a few such cases I guess my follow-up question is whether such cases are, as I suspect, extreme outliers, or whether someone with MS can be more susceptible?

 

[ShiftKicker]

I think the answer to that question would be in the hands of researchers and statisticians!

 

[LAmser]

I think the answer to that question would be in the hands of researchers and statisticians!

Fair enough

 

[lgelb]

Apart from a genetic form of ALS (C9ORF72 expansion) that may account for a high percentage of "initially diagnosed with MS" ALS cases, that you would know of in your family, I see only a handful of reported concurrent cases in the literature. So by far the best bet is that this is MS-related.

Best,
Laurie

 

[LAmser]

Apart from a genetic form of ALS (C9ORF72 expansion) that may account for a high percentage of "initially diagnosed with MS" ALS cases, that you would know of in your family, I see only a handful of reported concurrent cases in the literature. So by far the best bet is that this is MS-related.

Best,
Laurie

Laurie, thank you very much. I have no history of ALS in my family at all. And I agree that there are very few true concurrent cases.

On top of that my MS specialist neurologist called me back this afternoon after leaving a message that I was concerned. She basically backed up everything you guys have told me. I will be having another MRI soon, but in her view the spasticity is absolutely related to the MS. She said that she has never had an MS patient who developed ALS and that my profile and symptoms (temporary visual deficits, sensory symptoms, and now some spasticity) were classic MS and didn’t fit ALS at all. She told me to forget ALS. And she is prescribing some baclofen in the meantime. Bottom line, I “just” have MS . Which I know on this site would be considered a preferable diagnosis.

Thanks again for the generous time you all gave me, despite not really being in the right place. Best wishes to all.