Symptoms and wanting some clarification

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ABCLuke

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Hi all,

Thank you for your time, I’ve been reading your forum and you’re all very generous with your time and detailed responses.

I’m going to see Neurologist on Saturday.

Symptoms and recent events:
Muscle twitching, and in both calves following an extended run on the weekend.

Have got a history of toe and foot cramping, as well as involuntary muscle movements.

And can get consistent shaking in a few fingers.

Eating dinner the other night, wasn’t able to get all the small chips on the fork the other night. (Still able to grip cutlery).

Recent History of tripping and slipping going down stairs. I can walk on my tip toes and heels still.

PCP did analysis of my balance, Gait and reflexes but couldn’t find any issues, but still referred the console.

Thank you very much for your time and consideration, I’d also like to donate so please let me know what a worthwhile think that funds can be allocated to?
 

affected

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Hi Luke, not sure what would make you feel you have a terminal illness, but hopefully the neurologist will figure out the right path to take diagnostically. Twitching, cramping and shaking are like saying you think you have a brain tumour because you got a headache. So try to just allow the neurologist decide what needs investigation, don't walk in and say you think you have MND.
Let us know once you have seen the neuro for sure.
 

lgelb

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Though more of a time frame and your age/fitness would be helpful, off the top, it all sounds more systemic than neurological, possibly in part a response to stress of some kind. So I would expect the neuro exam to be reassuring. But be careful with stairs, thresholds, and the like, regardless. Falls are not good.

Your thought is most generous. You can donate to these forums if so inclined, or I am sure there are many fine MND charities in Melbourne that our Aussie ("affected") can comment on.

Best,
Laurie
 

ABCLuke

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Thank you both for your comments. I’m 33 fitness average, in terms of the falls they’ve been occurring since 2019 and had incidences of falls going up the stairs prior to that. I’ve got a build up of fluid in both ankles, and quite certain that drop foot is present in both feet.
 

lgelb

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Fluid buildup in the ankles suggests potential venous insufficiency/cardiovascular dysfunction, etc. If your GP has not explored this thoroughly, someone should.
 

Bestfriends14

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If you are certain there is drop foot present in both feet, I assume you can no longer go up on your toes or back on your heels and you are walking with mobility aids? Double drop foot is very apparent to medical professionals, so what have they said?
 

ABCLuke

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Hi all, thank you for your support so today visited the neuro. He diagnosed me with BFS, it has only been a week with the symptoms and has now spread from calves to feet. Don’t know much about BFS and I had some episodes last night of like jolting before I tried to go to sleep. Now getting a random twitch in the rib region. But Neuro found no issue with reflexes, strength, sensation and clinical weakness. Also mentioned an issue with the pinky been stiff and sore, neuro brushed off by saying not concerned as no atrophy present. Didn’t want to see me for a follow up or no need for ECG, was very confident in he’s appraisal. Would anyone seek a 2nd opinion, although 3 GPs and Neuro don’t seem concerned.

🙏
 

lgelb

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No, but I'd ask about an evaluation for movement disorders like RLS/PLMD, in addition to evaluation of any fluid buildup.
 

affected

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You definitely need to accept this as it sounds like the diagnosis totally fits.
Donate to the big freeze, and get back to your life mate. Great result!
 

Bestfriends14

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Why continue wasting your life chasing a disease you don't have? No, I would not seek another opinion and, If I were you, I would be grateful and go live my life, savoring each day of health that I am blessed to have.
 
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ABCLuke

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Thanks this will be my last post, dropped my phone this morning, had the shakes in my right hand carrying a heavy esky and now dropped my fork at dinner. Seriously afraid
 

lgelb

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There is help available when your fears are dominating your life. You can also scare yourself into dropping things, tripping, shaking, aches and pains, and so much more.

When your mind is rushing around, it can be harmful to your health and happiness, as you are seeing, but that is nothing like ALS or anything close to it. Your GP can help you find resources to dampen your fears, and deal intelligently with any physical issues that are left.

Closing this thread -- you do need help, but not here. Please do not start another, but use your energy for helping yourself to feel better.

Best,
Laurie
 
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