Foot hypermobility and muscle loss

[Mumoftwogirls]

Thank you for all that you do with the forum and the support you offer us all, I appreciate your time in reading my questions.

Female, 35 years old. I am been having noticeable symptoms for a few months now, though through this helpful forum I ruled out als, initially. I am 6 months postpartum with my second. I had extreme dizziness, fatigue, excessive yawning, nerve pain on the top of my right foot and had developed a tremor. I was also waking in the mornings and night with numbness in my toes which would pass upon walking a few minutes. This still persists.

I had a clear brain MRI and was referred to a neurologist for my tremor. Awaiting my neurologist appointment I develop body wide muscle fasciculations on May 13th with frequent ones in my right foot and toes which have now become more random like the others across my body. Fasciculations are better some days than others. I saw a chiropractor/kinesiologist a week later who did a physical and her only complaint was that my right ankle felt “loose” and prescribed magnesium and zinc whilst I awaited the neurologist.

On May 24th I saw the neurologist. Clean physical, apart from a postural and action tremor and a week later a nerve conduction test and (a very rushed) EMG. A young anxious female isn’t taken all too seriously I feel. EMG clean. He booked a follow up for 12 months regarding the tremor. Diagnosed benign fasciculations and benign non Parkinsonism tremor.

6 weeks after my appointment with him I noticed my right second toe was not bending correctly and “getting in the way”. Tip of toe bending when walking in a claw form. That progressed to my big toe too. Then this week I noticed pain on the bottom ball of my foot after being on it all day, like there wasn’t enough padding… and soon realised there definitely wasn’t as much padding and my toes and foot was all extremely bendy compared to me left side. I now need to swear shoes and not go barefoot inside as my sole on that side begins to ache quickly.

I saw a podiatrist today who said I definitely have hyper mobility in my right foot and ankle. That it’s loose. I told her about my other symptoms and she suggested to put my mind at rest to maybe consider going back to the neurologist and that she could work with me in the meantime at building the muscle in that foot and toes. She was happy with my strength but noted the toes in question do bend when strength testing. I called today and go back to the neurologist on August 6th.

I am please wondering, if he performed an EMG, one of the needles on my right ankle, and at that time my ankle was supposedly already loose (which I hadn’t told him) - would it have picked up any issues with that ankle/foot? Can things change this quickly in 8 weeks as far as my physical and EMG goes? I am trying to think rationally and even started seeing a psychologist thinking this was all in my head and anxiety - but now to have muscle loss in my foot and toes, my initial thoughts are hanging over me tonight, and I’m wondering if there is anything else this could be instead.

Thank you again for helping me, your insight/opinions are deeply appreciated. Writing this as I rock my sleeping baby girl hanging in her carrier on my chest.

 

[ShiftKicker]

Hello-

Yes, it would have picked up issues. Your loose ankle appears to be a structural issue. Loose and/or weak does not mean the kind of muscle loss in the way MND affects people. By all means, return to the neuro if you require their reassurance, but joint hypermobility is not the same as a loss of signal from central nervous system. Your neuro has a baseline from your last appointment, so you can point out to them any changes and have your concerns addressed within a couple weeks.

 

[Mumoftwogirls]

Thank-you for replying so quickly. It seems the last two weeks everything is changing so quickly for me. I noticed this morning my ankle is also showing muscle loss… which the podiatrist didn’t check. This is atrophy isn’t it? . Definitely reduced strength in that ankle too. I’m completely baffled as to the clean EMG now.

(image removed per forum posting rules)

 

[lgelb]

Just because you don't have anything wrong with the muscles or nerves fundamentally, as suggested by the clean EMG, doesn't mean you can't have structural foot problems.

Working with the podiatrist seems like a good idea. If that doesn't bear fruit, you could see a medical geneticist to make sure you don't have a more systemic hypermobility disorder.

 

[Mumoftwogirls]

Thankyou for replying Igelb. Today I am feeling very down, but keeping a smile for my girls. Yesterday the gp confirmed atrophy to my foot and ankle and my neurologist appointment has been moved to Monday as I’m also noticing differences with my tongue. I’m still walking but I will say it hurts in my joints on that ankle and I’m favouring my other leg without thinking about it. I’m shocked at how fast this is moving. Completely clear physical and EMG only 8 weeks ago and now my life feels turned upside down.

 

[Mumoftwogirls]

I’m sorry to write again. I just needed an opinion if I may trouble you. From me noticing my big toe was weak, and my right foot was more skeletal than the other… until tonight where my big toe is nearly completely floppy and whole foot is drastically worse - it’s been one week. One. is this possible? Or should it be more gradual if it was in fact als. Monday can’t come quick enough. Xx

 

[lgelb]

Yes, it does sound like a faster process than we'd expect ALS to be.

 

[Mumoftwogirls]

Just to update. I walked in today and the neurologist asked me what brings me back so quickly. I tell him about my muscle loss, confirmed by doctor and podiatrist. He asked me to take my socks off and show him. Upon looking, he told me we are all asymmetrical, which I know. But also know my body. He then asked me to come over to the bed to hold on to it - and stand on my tip toes, which I could do. He told me there was no way I could support my body weight if something was wrong with my foot. He told me I needed to go back to my doctor and ask for an MRI/or appropriate scan regarding the muscle loss. He did not recheck my reflexes or anything other than the tip toe test and asking me to push on his hand with my toes. When I asked if he would he consider another EMG on my foot and tongue he said I should consider a psychologist. I see my GP Friday. I feel unheard. Should he have done more. A second opinion? or do I need to let this go and see how my symptoms develop. thankyou again for your reply’s and time you have spent on me. Xx

 

[Nikki J]

What did you want ? He tested strength and examined your foot for atrophy addressing your complaints of the day. You say you walked in. Without an appointment? If so you are lucky to be seen and not sent away. Go to your gp and see what they say when you tell them what happened.

 

[Mumoftwogirls]

Thank you Nikki. Sorry for my wording, I did have an appointment to see him today. Definitely didn’t just show up. I will follow up with GP.

 

[Mumoftwogirls]

I just wanted to come and provide an update and if I may, ask for an opinion. Thank you for the time you have given me so far.

I saw the GP who recommended a physiotherapist.

I went to the physio today and she was great, she gave me the best reassurance she could.
My problem ankle is curving inwards, which I didn’t realise myself. She suggested maybe tendinopathy. My muscles were very tight in that leg from my calf all the way to my glute and for that she tried some dried needling. Since my last post the muscle aching pain has moved from my ankle to my calf and glute. The muscle ache in my calf is bad and it made it hard for me to stand on tip toes for her today. My glute is a constant dull ache annd some coolness, and I have been having a few twitches there now too.

She was happy with my strength, slight decrease when device was place on inside of ankle and I was asked to not let her push my ankle outwards.
I have a slight measurement difference in my ankle but the calf and leg are the same and she wasn’t concerned. She has given me some exercises to complete for two weeks to see if I can correct the ankle.

I guess if this was happening on its own I would think a little more openly, but I’m scared. I began twitching on the 13th of May and two months later my ankle is smaller, aching and turning inward, as is my leg and glute aching and twitching. This all at the same time as I developed a tremor. I wake up in the night and I feel my body is slightly shaking, as I lay there scared - a minute passes and it begins to settle.

The only thing that’s not gotten worse in my muscle twitching. I would say it’s decreased by at least 50% from the first month, however it is more localised to my problem leg with the occasional pop elsewhere.

I see my doctor next Wednesday for a follow up. Should I be seeing another neurologist for a second opinion and another EMG now I have a “problem area”? My gastrocnemius muscle was the one tested on that leg, not specifically the ankle or foot.

Is this more of a watch and wait? Do these symptoms and timeline sound familiar to als/mnd?

Thank you again for your time and help. Xxx

 

[lgelb]

One thing often leads to another, but that doesn't make it a serious combination. You have validation that your strength is normal, but you are concerned and that can lead to poor sleep, focusing on a part that seems to ache, new twitches, etc.

We are all asymmetrical in some way -- different measurements on different sides. After all, we ask those sides to do different things, often without a second thought.

I would give the exercises a chance, working with the physio, before pursuing further care.