Cramps, twitches and clonus

[RickyR]

Hi all

Firstly can I say a huge thankyou to those that contribute and offer support to this forum.

I have recently become concerned about ALS due to some recent symptoms that have emerged. It started a few months back when I started getting twitches all over, but predominantly in my legs (both legs). This was accompanied by cramps in the arches of my foot (both feet).

I went to the docs, who ordered some blood tests to check for mineral deficiencies and these came back clear. Both the twitches and cramps continued so I went back to a physio, who did a basic Nuero exam. He identified clonus in both feet and has now referred me to a neuro. He found no other symptoms (no muscle loss etc), and I’ve not experienced any other symptoms besides the above. However as he indicated that clonus and hypereflexes (which I had in both legs) was abnormal and was a sign of an UMN issue, I am now terrified.

Can anybody advise whether these are early symptoms of ALS (or another MND)?

I am a 38 year old male with no other health issues.

 

[RickyR]

Please can anybody offer any advice on the below, I’m out of my mind with worry this could be the start of ALS. Any advice would be welcome at all

 

[Nikki J]

Hi
it is highly unusual for ALS to start bilaterally

hyperreflexia is very common and usually benign especially when bilateral.

clonus bilaterally is also not typical in ALS. It has many causes and can be normal. How many beats did you have?

 

[Clearwater AL]

Ricky...

You were referred to a Neuro, A highly trained highly educated
doctor… you’re not.

He found no other symptoms, no muscle loss.

Apparently, but knowing enough not to consider an EMG at this
time. Unless you are scheduled to return.

You may consider getting help with your out of your mind
Health Anxiety.

Until then… avoid Dr. Google. Come back after some order
for further follow up appointments and tests are complete.

 

[RickyR]

Hi both

Sincerest thanks for your replies, I really appreciate it. The physio said I had 3-4 beats which he described as abnormal. He then tried testing again in a different position (lying down) and couldn’t find any clones, but then reverted the original position (foot hanging) and said on that occasion he identified 5 beats. Given my dad has a neurological condition (CIDP), he made in urgent referral but didn’t give me much further detail.

Clearwater I apologise I should have been clearer. The physio found no other symptoms, but he referred me to the nuero for further investigation. God knows how long I will have to wait, hence why I reached out to you knowledgable people for support. I think it is the combination of clonus, twitching and foot cramps which all appear as symptoms of ALS which have heightened my concerns, although I note the repeated mention of weakness and failure which to date I have not experienced (that I’m aware of).

I am also making steps to address my anxiety, although these symptoms are very real and not in my head.

Thanks in advance x

 

[Nikki J]

Three is certainly normal. Really anything under six can be a normal variant. Again bilateral symptoms point away from ALS. Cramps and twitching are really nonspecific as is your questionable clonus. Please do not focus on ALS when you see the doctor but ask what is wrong

I am sorry about your dad. I do not believe there is any connection for a family history of CIDP and ALS.

 

[RickyR]

Thanks for your reply, I truly appreciate it. I will try to refrain from visiting the forum until I have the outcome of further tests. Sincerest thanks

 

[RickyR]

Hi all

Unfortunately I’ve been advised that I may have to wait up to 6 months for an appointment, so I’m reaching out for further advice in order to avoid the Google rabbit hole.

From what I understand (please correct me if I’m wrong), but clonus in respect of ALS is a symptom of UMN. Is this often a presenting symptom, or something that would usually follow other symptoms? I am a bit confused as most other threads suggest muscle weakness and failure is often the initial (and indicative) symptom of als, however other threads suggest this is not seen in UMN ALS?

If the clonus was an initial indicator, what other symptoms would likely follow, and how soon after?

I appreciate any advice you can give me. Sadly I am still very concerned this is the start of ALS, and it’s having a real impact on my mental health. I am seeking help to address my anxiety, but I do not believe clonus could be brought on by anxiety alone (unless I’m mistaken).

Kind regards

 

[Nikki J]

I am unimpressed by your clonus as I believe it can be a normal variant. Up to 6 beats is taught as a normal variant over here. I am sorry you can not get a sooner appointment. Your choices are to live your best life and ignore mr google and other online sources, continue to worry or pursue a private opinion. I don’t think there is anything more we can say

 

[lgelb]

As Nikki told you, <6 beats of clonus is nothing to stress over. And a physio is not qualified to opine on a neuromuscular diagnosis. You are worked up for no reason.

There is no point in imagining a "what would happen next" scenario as there is no reason to jump to ALS at all. I can look out at the rain today and say, "What if it were summer?" and go from there, but so what?

Very wise to work on the anxiety and live your life -- the kind of life that others here cannot.

 

[RickyR]

Hi

Sorry to come back here for more advice, but I’ve since found that my “urgent” referral was subsequently downgraded as “routine” by the nuero clinician, and therefore I will almost certainly be waiting up to six months to see the neurologist.

Since posting I have now developed a tightness in my left calf, and the twitching has become more prominent in my feet, particularly my left foot. I also continue to twitch all over, and both feet continue to cramp. Do these sound like ALS symptoms and should I be going back to my gp in an attempt to have my assessment reviewed and (hopefully) expedited?

Regards

 

[Nikki J]

If you are worried and want to talk to your gp sure do so. Do more twitching and tightness make me think you are any more likely to have ALS than I did before? No Apparently the person at neurology who reviewed your records was also unworried

 

[RickyR]

Thank you for the reply Nikki I appreciate it. I think my concern rests in the fact that my symptoms, of twitching, UMN signs (hyper reflex and clonus) and now a stiff leg combined seem to point to ALS on a number of sites I have visited. I’m trying to think of what else the cause my be, but these symptoms seem to crop up continually when looking at past forums. Do these sound like presenting symptoms?

I have two final questions before I hope to sign off this forum until my appointment.

1) do ALS twitches continue when a muscle is flexed, as mine seem to be only when the muscle is relaxed?

2) if symptoms are primarily UMN in nature, does weakness always follow or accompany in ALS?

I apologise for continually asking this forum, but sadly in the absence to being able to see a professional for likely 6 months and unable to afford a private apt, I am desperate for answers as to what could cause my symptoms which have been ongoing for almost 2 months now with no subsidence.

Regards

 

[RickyR]

By means of update, I have decided to pursue a private appointment and have an initial consultation on 5th June. In the interim I was hoping for any further advice, as I prep for the apppintment.

My symptoms have continued and the tightness in my left thigh and calf seems to come and go. The tightness feels slightly like a knot in the muscle, which eases then comes back. My feet (both sides) also feel like they start to cramp in particular areas, but then ease. At time these feel like a mild pain. I was woken by these for the first time last night. As far as I’m aware, I have experienced no weakness, but my left leg in particular just doesn’t feel normal. My twitching continues bilaterally in my feet and legs, and seems to be more pronounced immediately after exercise.

Do these sound at all familiar as early symptoms of ALS, or any other conditions, based on your own experiences?

Apologies again for reaching out, but I’m desperate for information and the wait is exhausting.

Regardless of the outcome of my initial appointment, I will ensure I update this thread for the benefit of others suffering any similar symptoms. I’m sure I’m not the only one victim to ridiculous wait times!

 

[Nikki J]

I am glad you have an appointment. Be sure to write down everything you want to say and ask. A concise and specific timeline and an organized question list will help you get the most out of the visit.

no your symptoms don’t sound familiar to me based on my experience of my and my family’s

good luck and yes please do report back. It is helpful to everyone to see how things turn out