Could this be ALS

[Jilly24reid]

I am 44 years old and female. Last Oct I had a nasty bang to the head and a whiplash injury. In Nov i developed tinnitus in one ear and unsteadiness. In Dec i started to get a buzzing/tingling feeling in both feet. The tingling/buzzing has persisted and is intense mainly in my feet but sometimes in my left hand too. I have had cramping in my toes for the last few weeks too. My left toes started twitching by themselves about 3 weeks ago.

Over the last week I have had increasing twitching of the muscles in both legs and occasionally my abdomen. The twitching is in my upper and lower legs- right and left. It’s fairly constant now and worse as the day goes on. I have also had muscle pain in my legs. Like I’ve walked for miles and miles that day even if I have been resting. My legs feel heavy at night time and this disturbs my sleep. Both my hands feel stiff especially when cold. I have had a funny feeling in my forehead (numbness) and my right eye feels a bit droopy (not visible to others- just I can feel it).

I haven’t had muscle weakness although my legs feel tired- pretty sure no loss of strength. I’m so worried that the muscles weakness is on its way and that I’m in the early stages. I’ve been referred to neurology but I’m looking at a 9 mth wait. My GP didn’t mention ALS but did mention MS but said that my symptoms are not entirely in keeping with that. Can anyone give advice please. I read that tinnitus is not typically associated with early ALS but then I read somewhere else that it can be. I don’t have any hearing loss. Thanks so much.

 

[lgelb]

I am sorry I missed this initially, Jilly.

This doesn't sound like MS or ALS to me. Downstream, new problems can arise after a head injury, especially if you didn't get all the rest you needed. No loss of strength with all that you have described is very reassuring.

Can your GP refer you to physio? I think that could help. You might also try therapeutic massage/hot baths/hot tub.

As you say, your sleep is disturbed and that magnifies everything. I would try to work out a pre-bed routine that is a little more relaxing (hot bath, light stretching, music, reading, turn off the screens, etc.) and track your sleep with a wearable for a few nights to see where things might be off, then discuss with your GP.

 

[Jilly24reid]

Thanks for your message. Since I posted I have had stiffness in my right knee which is accompanied by a feeling of weakness. Both my legs feel so tired- almost like I have flu in my legs. They are uncomfortable and achy. I saw GP yesterday and they have escalated my referral as urgent for neurology. All my bloods have been fine. My muscle fascillations have continued (every 30 secs or so) and I’ve had a few limb jerks too - legs and feet. I’m very worried.

 

[lgelb]

You might ask your GP if they think empiric treatment for RLS is warranted, if the twitching improves when you move around. A wearable can also provide a percentage of time in sleep where you had unusual movement.

 

[Jilly24reid]

Thanks for this. I have googled RLS and I am desperately hoping that’s what I have. I appreciate you taking the time to reply to me. I don’t feel any twitches when I’m moving (except driving). Can I take this as a good sign? I can manage my anxiety until evening and then it’s hard not to panic when my legs are twitching like crazy.

 

[lgelb]

Yes, that is a good sign in terms of ALS. Some forms of tinnitus may manifest in ALS, but I have not heard of it at onset. It is also worth noting that stress can do the same thing, and tinnitus can be associated with brain injury as you have had. Bilateral leg twitching is also less worrisome.

I would try to keep your eye moist with drops morning and night (Genteal is the preferred brand in the US, not sure what's available in the UK but you can compare the ingredients) and see if that helps.

 

[Jilly24reid]

UPDATE on symptoms.

I just wanted to update people on my symptoms in case anyone has my symptoms in the future. My symptoms started in dec with headaches, unsteadyness and tinitus in dec. This progressed to buzzing in my hands and feet and then muscle facilitations about 7 weeks ago. The muscle twitches started with my left toes twitching, to twitches in both legs and from the rib cage down. They were constant. I had some twitching in my back, neck, arms and face but infrequently. I also had headaches everyday. The tiredness and weakness started about 5 weeks ago with stiffness in my knee. On Tuesday this week I had a very sudden gush of clear fluid from my left nostril and since then I have felt great. I still have residual twitches but they have reduced hugely. No headaches, no tiredness and I’m overall feeling very well. I was terrified I had MND and I didn’t believe it couldn’t be but it wasn’t. I still don’t know what was wrong- a cyst pressing on my nerves but I feel like I’ve been given a miracle. I thought how could it not be MND with all the twitches and I was terrified waking up in the morning in case I had weakness.

I am going to wish everyone well. I can’t thank everyone enough on this site for the support that it gives. I am eternally grateful for the replies I received,

Best wishes everyone.

 

[ShiftKicker]

I am very glad you've had some relief and a reduction in symptoms. I also am hoping you have seen your doctor to report this new development.

Take care