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Rojo

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Hi All,
Like many others on here, I have tried to avoid posting for as long as possible but would really appreciate your views on my symptoms based on your experiences. From what I have read, this site is a tremendous support and your are all very generous with your time.

My summarized story is as follows. I am 36 years old and had been experiencing gradual reducing strength in my arms and legs for at least 6 months presenting in extreme shaking and instant muscle fatigue on exercise (from squats, plank, to simply moving my legs or arms into a particular position etc).

In September, I began to feel a strange heaviness in my arms (particularly left arm and hand) and legs. I described my legs at the time as feeling like I was walking up hill while on the flat). My PCP referred me to a neurologist who carried out numerous bloods and brain and spinal mris (all clear). He didn't comment on my physical review apart from normal babinski and that he felt not MS (my mom has). He referred me for an EMG which I am due for in a few weeks.

Since meeting him, I started experiencing twitching (ongoing over 2 months now) which started in feet and lower legs and increased to thighs, abdomen, left eyelid and occasionally bicep and left hand. I tried to ignore the twitching based on advice here. However 3 weeks ago, I began to feel a strange stiffness and instability in my lower left leg/foot. On inspection, I noticed significant atrophy in the arch of my right foot (where the twitching is constant). I have experienced some burning in this foot which I know is not typical in ALS. I also noticed a "dent" in my right calf. My right calf is also approx 1.5cms thinner than the left. I will upload my photos if that's ok. I understand my doctor needs to diagnose atrophy but I would appreciate your comments until I see him again. I can walk on my heels and toes.

In the last week, my left fingers feel a bit stiff which I notice particularly when typing.

I appreciate I have no definitive muscle failure as is described in the stickys but my concern is that I have affected muscles in my foot and/or legs and when the remaining muscles are also affected and no longer able to compensate, I will then progress to failure.

I understand my emg is key in all of this, but this is not for a number of weeks and I will have to wait a few more weeks after this to see my neuro again and update him on the progression of my symptoms since we met. This strange feeling in my leg and fingers along with the constant twitching is causing me so much concern to consider posting on this forum. I would be so so grateful to avail of your thoughts on my symptoms based on your considerable experience.
Thanks so much in advance x
 

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lgelb

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Instead of trying to match symptoms up to ultimate progression of ALS, you will feel better if you reflect that nothing has failed yet. This could be nothing, it could be an adult-onset muscle disease, something systemic, etc. Burning can suggest peripheral neuropathy or just dry skin.

In ALS, arms and legs, fingers, feet, eyes and abdomen aren't all involved initially as you describe.

Even if you did have significant atrophy, which I don't see, there are many causes besides ALS and without clinical weakness, there's no reason to associate atrophy with ALS.

This is all good news, by the way.

Best,
Laurie
 

Rojo

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Thanks for your quick response Laurie and your positivity, I really appreciate it.

Reading between the lines, I guess you are saying, there is a possibility this could be something else but also the possibility that it could be ALS?

I have read alot on this forum and know that twitching and atrophy don't necessarily mean ALS but I guess what has really bothered me is the combination of my symptoms rather than looking at them all in isolation being caused by different conditions.

I've tried to research other muscular diseases and none of these seem to be consistent with my symptoms, in particular the fatigueability, twitching and atrophy. ALS keeps being the one which keeps ticking the box of the majority of my symptoms. I've had a wide range of bloods done for systemic conditions and all came back negative inc. for sjogrens, anti-musk, CK etc.

I know I need to wait for the EMG and neuro visit and you guys can't diagnose me but I guess I'm just trying to get my head straight in advance on which of my symptoms are consistent with ALS and which aren't and to get these from those with experience rather than what I'm learning from the dreaded Dr Google. Like many others here, I'm petrified of the what may lie ahead of me and it's all consuming :-(

Thanks again x
 

Rojo

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Hi Laurie

I just noticed a typo in my first message in case it makes any difference - the weakness that I have felt is in my right lower leg/foot, the one where the atrophy and twitching is (not my left!)

Thanks
 

Vincent

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I don't know how to tell you, but here goes. No, Laurie did not say that she saw ALS in what you describe. I know it is hard to ignore Dr Google, but twitching without clinical weakness is not ALS. ALS also does not feel weak, tired, burning or any other of a myriad of other sensations. I just have muscles that don't work. I can look at the muscle, I feel fine, I can concentrate on the muscle, but for some strange reason it will not contract. We also don't give out an exhaustive list of symptoms. We find people's imagination starts to drag them down a dark hole of symptoms that they don't have. Good luck figuring out what you have going on, but nothing you describe sounds like ALS to me.
Vincent
 

Firefighter58

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You don’t have ALS DO THE HAPPY DANCE,,,,, and stay away from Dr Google,
 

Rojo

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Laurie, Vincent, Al and any others

Can I ask you, if you don't mind, were the first symptoms for you all failure of a limb i.e. retrospectively, you didn't notice any tiredness, twitching or weak or funny "feelings " in a limb that showed some signs of atrophy?

I know people on the forum talk about a long time until diagnosis for ALS as it's different for everyone and follows a different pattern and it needs a certain number UMN/LMN signs to be diagnosed. However, is it easier to recognise the first systems of onset and that's why its obvious to you guys that what I am experiencing is not a pattern of ALS.

I'm constantly trying to put this to the back of my mind but everytime I go to walk, my leg is almost limping and I have now begun to have cramps in the arch of my feet.

Thanks again for your time and perspective to what seems like a lot of anxiety from those of us who visit here but you're experience and generosity is invaluable to us all x
 

Nikki J

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I believe Vincent already said he had and has no feeling of weakness or other associated with failure. I will add my voice to that. No prodrome. Beyond that which is in the sticky too we don’t describe our onset as it can trigger symptoms to some of our readership. Please no more posting until you have emg results
 

Rojo

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Hi Again

I know you asked for me not to post until after EMG but I had some alarming new symptoms last night/this am that are sending me off a cliff edge and I don't know if there is anything I can do other than wait for my emg.

Out of the blue last night my right upper arm seemed to "go weak". For example, when I tried to lift my arm, like a bicep curl, it would just fall back down again as if it was dead. There was no pain or tingling or numbness, just almost as if it was dead. I tried to ignore and perhaps I had put pressure on one of the nerves under my arm when leaning into my sons cot and went to bed in the hope if would be fine when I woke up.

However, it is still the same 12+ hours later, I can't lift a bag in a bicep curl motion (which i could do yesterday) and my arm gave way when trying to hold or pick up my son with my right arm. I have considered going to the A&E or my PCP but I'm not sure they can do anything for me so am in limbo until my EMG.

Can you let me know whether you have seen muscle failure present/described like this - I believe it is my upper arm that is giving way so I can still type and use my hand but I just can't lift anything heavier than a book.

Thanks again
 

Clearwater AL

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Rojo, your first sentence above...

"I know you asked for me not to post until after EMG but I had some alarming new symptoms last night/this am that are sending me off a cliff edge and I don't know if there is anything I can do other than wait for my emg."

EXACTLY!
 

Rojo

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Thank you

The only reason I posted was because my symptoms have changed to what I had initially received your advices on and I wondered if that made a difference to the views you guys have already expressed. I am not trying to annoy any of you and I genuinely want to go away and not annoy you with any of my concerns again. If my additional symptom doesn't raise any red flags with you or change what you have already said, then I will take that and just wait.

Thanks again
 

codyclan

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So which is it--you can't lift anything heavier than a book or you can't make the motion at all? You really aren't describing ALS symptoms. I know you think you are, but you're not, and there's not much else we can say about that. Wait for the EMG and then, please believe the results.
Best wishes,
Tracy
 

Rojo

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Thank you for your response, I’ll take your advice and will be beyond delighted if I get clear emg.

I can make the movement with nothing in my hand as but not if I hold something in my hand. I thought I could bend my lower arm with nothing in my hand As it’s not using the muscle in upper arm. When I hold something in my hand, that would require upper arm strength to lift, it won’t.

Thank you and apologies again if I’ve annoyed people here
 

Nikki J

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I f you have an unexplained loss of strength in an arm go to the doctor. There are lots of causes and most of them treatable if addressed in a timely fashion.
 

Rojo

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Hi All

Just a quick update and follow up question, if you wouldn’t mind. I had my emg today, the neurophysiologist placed needle in right thigh and righ bicep only. He said findings were normal. He will be sending my report to neurologist tomorrow so I don’t have with me. I was so relieved with this and didn’t ask many questions. My symptoms are in my right lower leg/foot and left fingers (twitching, stiffness and reduced strength). Having read the sticky, I just realized that the emg of 2 points on my right side may not pick up if left fingers or right foot affected. I did ask whether he needed to do test on left side given my fingers on this side we’re the same he’s that felt weak, he asked me to clench my first and said no they were fine.
I’m due to see my neuro in a month to ask further questions but in the meantime, should I seek an emg of affected area as it takes 3 months to get an apt here.
Thanks for your advices x
 
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