Pretty sure its ALS

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Paully50

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Hi

new here

So my symptoms started 2.5 years ago.
it all started simple enough, cramping in hands, pains in my wrists and arms when i was decorating rooms in the house.
They just felt so weak really quickly whenever i did anything. i couldnt lift much at all and fatigue set in very quickly

Things progressed a little and i noticed my legs looked thinner than usual and felt weak and hurt during the night. My right leg especially.
i also noticed my shins had gone very bony. i had lost alot of muscle mass from my arms and legs so thought enough was enough and needed checking out.

2 years ago i had an EMG and nerve test at my local hospital organised by my rheumy. They just tested 1 muscle in my right leg and 1 in my right arm/wrist
The test came back normal/negative

having a normal test i then carried on with my life.
But i was still having alot of weakness and wastage in my legs.
I struggled to even cut the lawn and walk the dogs.

by the end of the night i was really tired and ached all over
i plodded on with life, thankfully the pandemic came and i found i was seated for more of the time which helped with the weakness
Last year i noticed i was getting short of breath quite alot. I kept a spo2 meter handy to check my o2 levels when i felt breathless. i was also waking with a headache each morning so i think im having problems with co2 still in my bloodstream.

Jump to this month.
My legs and arms look very thin and my shins and ankles are just bone. However, i can still go onto my tiptoes. I am convinced my brachialis muscle on my left and right arms is completely atrophied. i struggle to do an exercise that uses this muscle. i cannot feel the muscle at all and there is a gap in its place. i can push my fingers right inside near my elbow.

i am now under a neurologist, he has noted that my left leg is now 1cm thinner than 6 months ago. right leg stayed same.
i have lost so much weight without trying. i am a bag of bones. i wonder how i am managing to walk around. many people have noted it.

My Neuro has noted that my right ankle jerk is absent and my left is weak, and my left bicep reflex is also absent, my right is normal.

This has freaked me out, i checked the nhs website what those meant and it is a problem with LMN lesion and they had ALS as the top reason on both ankle jerk and bicep reflex.

So now im worried that the EMG was done incorrectly or at the wrong time and i actually have ALS after all.
My arms and legs are so weak and wasted.
i am still having problems with my shortness of breath and bringing up lots of phlegm.

i cant think of any other reason why 3 of my 4 limbs has weak or absent reflex other than ALS being the reason.

I do not have any fasciculations and never noticed that i ever have.
i am still working as i have a desk job. im wondering if i have a slow progressing form of ALS as i am still able to walk after 2.5 years.


Does this sound like ALS.
 

Nikki J

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I don’t know what is wrong. It doesn’t scream ALS. There are a number of more likely causes of hyporeflexia from systemic things like thyroid disease to peripheral neuropathy to myopathy and more. Presumably since you have a neurologist you have been given a plan? What is next?
 

Paully50

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Thanks for your reply.

This is the thing. i dont even recall him mentioning those absent reflex's during our appointment. It was only when i saw his letter that he mentioned the absent reflex's and i freaked out.
He doesnt want to see me for 6 months....im sure he understands the seriousness of absent reflex's
His letter states that i have normal power during examination, he must be kidding me.

Am i right in thinking ALS has to have UMN lesion? all my other tests were normal none were hyperflexia
or can just LMN be ALS?
 

Nikki J

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You are right the criteria for ALS include upper and lower motor neuron findings In fact I recently heard one of doctors who set the criteria speak and they mentioned the importance and significance of finding a hyper reflex in a weak and atrophied limb. Having hyporeflexia usually means it is something else unless that limb is almost paralyzed. Technically there could be pure lower motor disease which is pma That would show on emg and exam. It sounds like you need to call the doctor and ask these questions
 

Paully50

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Hi

Thanks for your response

Do you think the emg could have been erroneos? How accurate are they if they only did one muscle? I definirely had muscle wastage in that leg when it was done but maybe he did the wrong muscle?

Does the fact ive had the symptoms for 2.5 years without losing the use of any of my limbs mean ot os more likely to be a slow progressing als or is that normal timeframe. I can still run, jump, skip, drive, work. Just slower and less power.

Ive continued to lose muscle mass and weakness in all limbs but none have stopped working. What is very surprising is that the wastage and weakness is very symetrical. Especially my arms where my brachialis muscle in both arms looks to be almost fully atrophied. Both arms has caused yhe exact same amount of wastage in each.

If it is mnd causing the muscle loss and weakness would i always have fasciculations or is it also common to lose all the muscle and not get any fasciculations at all. I have not noticed any. Maybe one or two now and again for a feq seconds but no more than ive always had all my life.

Ive read that you dont get sensory pain but is it possible to get pain caused by the joints with muscle loss. If i lift something that is too heavy for my wrist i get alot of pain down my wrist. Could it be that the few muscle fibres that are still working are not strong enough to hold the item and its painful in those remaininv muscles.

I also get pains in my thighs during the night. My thighs arr still working ok although they are weaker and some muscles wastage. Could mnd still cause thos aching.
 

lgelb

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If the atrophy is as pronounced as you think, the neuro should be able to perceive it, and that would be a much bigger headline than absent reflexes, which are not uncommon. But atrophy and ALS are not the same thing.

As you will have read, 2.5y and still jumping/skipping is not a typical ALS onset, nor is symmetrical weakness/atrophy with a normal EMG, only two muscles notwithstanding. ALS onset is also not pain with lifting or at rest. It is not being able to lift it at all.

Fasciculations are not necessarily a feature of ALS, but it doesn't matter in your case.

Re "normal power," it's a numerical scale, and if he believes that you have it, it is hard to imagine that you have the muscle atrophy that you describe.

So whereas you are "pretty sure" you have ALS, I'm pretty sure you don't. As Nikki says, you need to follow up with your neurologist and primary care doc [I'd start with the GP].

Best,
Laurie
 

Paully50

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Thank you for your reply

so hyporeflex’s don’t generally point to als? that is reassuring if so.
my limbs are definitely far from paralysed at the moment. They are still fully functional although much weaker at present. There is definite wastage but i appreciate many diseases can cause this. I was just under the impression that absent reflex’s definitely meant lmn lesions which along with weakness and wastage left me freaking out it was als.

yes I’m still able to walk, run, skip, jump. Just very slowly due to no power in my legs.

As was mentioned on an earlier reply, I understand als must include both umn and lmn, so I was confused how you would find umn and lmn in the reflex’s as 1 has to be hyper and the other hypo. I guess the above answers that with the lmn signs being limb wastage and fasciculations and umn signs being hyper-reflex and Babinski Sign?

so generally with als, reflexs would more often be hyper? Does that sound correct? Am I understanding it correctly?

could I still have the pma variant of mnd as that is purely lmn?
I understand that is very rare. nhs website stated 1100 people diagnosed each year in UK with mnd but only 4% of that are pma so would only be 44 people per year out of 66 million.

should I ask my neuro for a new emg and include more muscles. is there any other tests he can arrange?
 

Nikki J

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Lower motor neuron findings in ALS are weakness, atrophy and emg abnormalities. Upper are abnormal reflexes sustained clonus and spasticity. They do exist even with severe weakness and atrophy.

pma is very very rare and should present with unilateral weakness atrophy and an emg in an ALS pattern

you should ask your neuro what they have in their list of possible causes. If they list more than one ask how they plan to narrow it down which may be more tests now or they may want to observe you and recheck for changes
 

Paully50

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Hi

sorry to trouble you again.

could you just clarify that absent reflex’s are not seen in ALS in a limb. (I understand the only time is when the limb is almost paralysed). absent reflexs are seen only in pma as that’s pure lower motor neurone.

some websites were stating absent reflex as an ALS symptom so it’s got me confused.

my Neuro has only stated absent reflex’s and other normal reflex's in his examination. He hasnt stated that any are brisk or hyper. He didn’t mention babinski sign either. My muscles do not show spasticity so I can’t see an umn sign. Can you start off with just lmn signs such as absent reflexs then it changes as the umn signs appear.

for absent reflex to be part of als diagnosis on a functional limb would it need to have an absent reflex and brisk hyper reflex in the same limb? Is that even possible?

sorry if these all sounds stupid questions But I’m so confused by it all as well as all the muscle problems I’m having.

the inner area above my right ankle feels very weak today. I can walk on it but sometimes it feels like it may collapse. The muscle has totally wasted away. I’ve turned into a bag of bones in 2.5 years. i just can’t keep any muscle on my bones anymore.

im struggling to get an appointment with my neuro so all these worries are going around my head. I have absent reflexs, muscle weakness and muscle wastage in all my limbs so I’m anxious. This is the only website I can trust, all the others seem to contradict each other.
 

lgelb

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No, it's not possible for hyperreflexia and absent reflexes to happen in the same limb at the same time.

Absent reflexes are not part of ALS onset. There are many other possible reasons. They don't necessarily even mean illness.

Again, I see no reason for worrying about ALS. Reread this entire thread. Your story doesn't match ALS onset.
 

Clearwater AL

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Just for information... later in ALS progression (beyond on early on set)
hyporeflexia can become present.

LMN signs in ALS include weakness, muscle wasting (atrophy),
hyporeflexia, muscle cramps, and fasciculations. Early manifestations
may vary, with affected individuals most often presenting with either
weak or no reflexes on into progression. Questionable concerning PLS.

However, as Laurie replied....

"No, it's not possible for hyperreflexia and absent reflexes to happen
in the same limb at the same time."
 

Nikki J

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That was my point Al. In severe clinical weakness. Close to paralyzed.
 

Clearwater AL

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Not to go on but...

"Early manifestations may vary, with affected individuals most
often presenting with either (weak) or no reflexes on into progression."

"Weak" is a designate of hyporeflexia . You can have hyporeflexia
and still be somewhat mobile, rollator, transfer from equipment
(PWC) and etc.

And here is one... high doses of Baclofen can also contribute to
hyporeflexia.

So... it's just another topic of discussion.
 

Paully50

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Hi

Thank you guys for responding. Im still fully functional at the moment. No rollator, walker, cane or any equipment needed. I can still run and jump around just with less speed and less power than before, so i would say still in the very early onset rather than later as you describe. I am no way near rolllator or transfer to other equipment stage.

I also have never taken baclofen whatever it is.

I spoke with my neuro today. He states i do not show any upper motor neuron signs when he examined me. He stated that i showed some absent reflexs but that some have changed. Some that were weak were now absent but my right bicep was now normal when it weak last time.

But he is going to schedule me for a repeat emg as part of his plan to find out what my muscle problem could be. He also wants me to have an mri and some blood work done inc repeat of ck as mine was 700 last time. The bloodwork will include some genetic testing. He said pma was still possible but highly unlikely.

It wasnt all good news. The ct scan i had in my heart last month also picked up some airway disease problem at the bottom of my lungs so i need to be further investigated. It may be some form of idiopathic lung disease and explains why i failed my spirometry with restriction. It means all the issues with breathlessness are not linked with my muscle problem and a different problem.

However, it did get me wondering if lung disease can affect muscle mass or infact muscle weakness too.
 

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Not directly, but any reduced breathing could affect your activity and exercise, possibly affecting your muscle mass and baseline strength.
 
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