Question

[FifthWing]

I started with twitching in Feb 24 which was the side of both of my feet. A quick Google search brought me to a jibbering wreck.

I’ve worked with my PCP but I have to admit it did take over my life. I was hyper focused on how I was walking and doing constant tests on legs etc. My timeline is below:

Feb 24 - noticed teitcjing
Mar 24 - saw PCP after three weeks of hell googling and ruminating - he said no reason to worry but keep an eye out for weakness
Mar 24 - Noticed I was scuffing foot when out running - hyper focused on left leg.
Mar 24 - second appointment where PCP said this was all anxiety - prescribed SSRI
April 24 - Twithching and tight muscles throughout left leg and some twitching elsewhere - leg feel hard to walk on
May 24 - follow up with PCP - muscle pains throughout left leg including hip, knee, thigh, calf, base of foot.
June 24 - after another appointment with PCP where all push and pull tests done (which I passed) he wrote to Neurology due to so many appointmenys
June 24 - Neurology wrote back and said without muscle wastage or weakness they would not want to see me as there was “no red flags”
July 24 - sitting here with pain throughout left leg including base of foot, top and foot and toes now to add to the rest of my leg. Leg feels so tight and my feet both twitching like mad.

Is there any other avenue I should explore in terms of ALS or have I just got crazy with hyper fixation and cause this all myself? I also had a spell where I was struggling with talking.

Apologies for long post.

 

[lgelb]

I would get a physio evaluation, but I don't think you have ALS.

 

[FifthWing]

Thanks for your reply.

I think my main worry is with the pain it being isolated to my left leg and foot. My toes are aching so much.

Is the neurologist right that without weakness or atrophy there’s no need to see me? Could this pain be a pre cursor to weakness?

Thanks again.

 

[lgelb]

In ALS, the pain is not a precursor to weakness. In some MNDs such as PLS, stiffness may be most prominent but you would not be looking normal on push/pull tests. Also, having started and continuing with bilateral twitching is very reassuring as regards any MND, as is the localized pain.

It is much more likely that you have an unappreciated injury, than anything else. I would also be sure that your shoes and gait are what they should be, either as a chicken or egg, another reason to get a physio eval.

 

[FifthWing]

Went to physio and he said my muscles were “tight” in my left leg. I’m not sure if this could be relating to ALS or not? My foot aches and my toes feel like tooth ache. I don’t know if me super focusing on my left leg could be causing me issues.

Also did basic neuro tests (push / pull etc).
Said I passed all my strength tests.

Still twitching in both feet but in my left calf im having loads of little twitches which are worrying me.

I wish Neurology had seen me in person but that’s out of my control.

 

[Nikki J]

No it doesn’t sound like ALS. What did the physio recommend? Sounds like you need a routine that includes stretching

 

[FifthWing]

Physio has given me exercises to do to stretch out leg muscles - Doctor has told me to try and stop focusing on twitches / left leg and ALS.

I’ve seen three separate doctors who all feel it’s anxiety related - none of them would do a direct referral to neurology or an EMG.

 

[FifthWing]

Further to the above my left calf has been cramping and painful today - I’m still having the pains / tightness in the left leg and what feels like awkward tongue (not sure if this could be anxiety due to everything).

After a clean clinical with push pull etc with PCP (not neurologist) should I still be pushing for a face to face neurology appointment? Neurology wrote back to my GP when last referred and said they didn’t require to see me. The twitches and pain in my leg should have resolved after three months and it’s worrying with it only being one leg.

I’ve also had pains in left shoulder this week- apologies for long post.

 

[ShiftKicker]

It really sounds like you would like to push for a neuro exam despite the neuro not seeing a need. Your doctor is the person who has examined you, and would be able to track changes, such as a progressive loss in strength or changes in reflex response, etc. If they can't report that, there's no justification to continue attempting to refer.

I would like to add, physio can take a while, sometimes longer than the 3 months you have set. They are also excellent for tracking changes and improvement/reduction in function. As lgelb recommended above, continuing to work with a physio will be helpful to you.

 

[FifthWing]

I thought it was probably the case that I was out of line pushing for it.

Would ALS be picked up on a basic neuro check? My PCP said there was no red flags.

I’m trying my best to do what my GP ordered and move on from this thought process but with the pain / tightness and twitching it’s proving hard.

 

[santimo]

You have a lot of signs of severe anxiety (as stated by your doctors) and you have 0 signs of ALS. I would focus in treating what you know you have and not what you don´t have, based on the symptoms described.

 

[FifthWing]

Last question - my left leg still feels off and my shoulder as of today. Would any issues be picked up on my basic clinical exam by my PCP? I am crazy for still thinking about this despite three PCP’s saying no red flags and neurology not wanting to see me after reading consultation?

 

[ShiftKicker]

I won't call you crazy, but your continued return here for reassurance does indicate severe anxiety. This must stop, as you are doing yourself no favours by focusing on a disease you do not have. Please believe your doctors, please believe the people who have answered you here. You really deserve support, so I encourage you to speak with a qualified professional, like a counselor or therapist, who can provide you some tools to deal with anxiety while you work with a physio and continue seeking your family doctor's care.

I will be closing this thread, please do not start another.