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Dear all,

thank you very much for taking the time to read this and I wish all of you the very best.

I have read the stickies and I know that a lot points away from ALS, however my neurologist cannot really tell me what is going on so I thought I'd ask.

I don't know if it is related but in since December I've had neck problems from strong tightness which was diagnosed by an orthopedist who prescribed me physiotherapy. My left arm has felt weaker since then but my right hand/arm are my dominant ones and I don't have any failure.
Fast forward to Feb when I had a doctor's appointment for a prescription (have to take thyroid medication) where I told him that my left foot doesn't roll as smoothly as my right one and standing on toes is more difficult however possible. He still seemed alarmed and referred me to the neurologist for a nerve conduction study and as the story goes the neurologist found nerve damage in the f-wave ?
He sent me to an MRI and wrote "radiculopathy" on the paper. The MRI showed no disc damage but the neurologist said that the area at my lower spine shows changes that are coherent with the f-wave results and did various blood tests. Everything came back negative except for Lyme disease. However the results rather indicated a past infection. He wants to do another test in two weeks.
I asked him about ALS and he said I don't have it because my reflexes are normal and they tested my motoric potential through a magnet thing on my head (sorry, I am not a native speaker and don't know how you call it) and that showed nothing.
But when I asked him about other possible diseases if Lyme turns out to be a dead end street, he said that we excluded everything and sometimes you cannot find a cause and would check again in 6 months. That worries me a lot because I have read that ALS is found through excluding everything else.

Since the nerve conduction test I have been feeling twitches in both legs (I assume they can be psychological) and my left hand feels weaker too plus there are some fasciculations in the thenar.

My neurologist said he sees no need for an emg.

Now, my left leg is definitely weaker (as the nerve conduction has also proven) and so is my left hand/arm (which wasn't checked though) but I don't fall, drop anything or fail.

My worries are the obvious weakness, the twitching (even though that worries me the least) and the lack of explanation for all of this.

I am sorry if this sounds stupid to you and I apologize if I am wasting your time. I wouldn't be worried if there hadn't been a negative result in the f-wave that matches my weakness.

All the best to you
 

Nikki J

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For US readers the magnet thing is TMS. This is used elsewhere to detect UMND. I don’t believe it is being used diagnostically here though it is being used in some studies

OP ALS is not really a diagnosis of exclusion. What is meant is that if you meet the diagnostic criteria for ALSotherwise THEN other diseases that mimic it must be excluded.
 

Footers

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Dear Nikki,

thank you for your reply.
Do I understand it correctly that you mean I would have diagnostic criteria like muscle failure and pathological reflexes and an initial thought of the neurologist that it could be ALS to make the "ruling out other diseases" count?

So it could happen that an abnormal nerve conduction study with muscle weakness could actually stay undefined or undiagnosed with reference to a specific illness?

I am worried because I have symptoms on only one side (even though the fasculations are on both sides) and abnormal results but no "failure" or pathological reflexes and wonder whether they can happen later on.

Again, thank you very much for taking your time.
 

Nikki J

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Yes. You need to have upper motor neuron findings like pathologic reflexes spasticity and clonus on clinical exam ( you also had a normal tms which argues against upper motor neuron disease) AND lower motor findings such as clinical weakness with a very characteristic EMG pattern before ALS could even be considered. Blood tests and mris are done to exclude other diseases that could cause a similar pattern.

Think about it. Taken to an extreme does everyone with normal mris and blood tests that rule out ms etc have ALS? Of course they don’t or every healthy person would have ALS which is completely absurd
 

This is me

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I am new to the board. I was diagnosed, after many many tests. With MND. I was told it is not ALS. Your symptoms sound similar to mine, but were progressing slowly over 3 years, but now it is getting worse every week. It started with difficulty hiking uphill, then progressed to difficulty when walking at a fast pace, now just difficulty walking all the time. Was falling a lot. My left leg is weaker and feels heavy, like full of cement. I have foot drop, left foot
Went from climbing fourteeners, backpacking, lifting weights, to almost no strength. You have to be your own advocate. I am fortunate to have good health insurance and have been persistent this last year. 3 years ago a doctor did an MRI and basically told me there was nothing wrong with me
 

Kristina1

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also remember that the NCS test is usually normal in ALS, so yours being abnormal points away from als not towards
 

lgelb

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Welcome, ThisIsMe. May I ask with what "other MND" you have been diagnosed? It helps us when we can see the context in which you are posting.

Best,
Laurie
 

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Sorry, posted too soon.

Thank you all for your replies.

Dear Nikki, I understand what you mean with your conclusion "...then every healthy person would have ALS". Unfortunately my neurologist does not think of me as healthy and I don't feel healthy either since I have obvious weakness. I took reassurance in the fact that the stickies said that weakness is about failure. Unfortunately I have also read in another post of yours that you have said that weakness can also be present without failure as in an inability to walk on toes or heals. That worries me again. There is also twitching in those weak muscles.

Is it possible to have a start in only lower monoteurons? Or do the normal reflexes rule out ALS for sure?

I am doing too much reading and found an article which said that nerve conduction failure can be a sign of ALS (even though it may not be a common sign).

I am sorry if I am asking annoying questions and thank you again for your kind help.
 

Nikki J

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You misunderstood my post If someone has a failure in the muscle that holds up the side of the ankle which I did. (Evidenced by inability to step sideways without falling, clinical weakness found by neurologist and an emg that showed acute and chronic denervation. ) That person might be able to toe walk etc because those muscles have not yet failed. There was indeed failure, and no weak sensation.

ALS is by definition a disease of the upper and lower motor neurons. If you do not have both it isn’t ALS lower motor neuron disease is called PMA.

Your neurologist says you have clinical weakness on exam but no emg required?
 

Bestfriends14

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Inability to stand on your toes or heels IS failure. The foot does not feel weak, you just FAIL to do a heel raise or toe raise.

You don't have ALS so it's best to move on and be grateful for the health you have.

Best of luck to you.
 

codyclan

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So you understand -- an inability to walk on heels and toes is actually failure. That's the point, there is no sensation of weakness just an inability to do something. The obvious weakness to which you keep referring is not necessarily clinical weakness and it sounds like the neuro has diagnosed radiculopathy. You are not presenting with ALS symptoms. Work with your doc, but there is no need for you to be on this site. That's good news.
Tracy
 

Footers

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Dear Nikki, thank you for explaining. I understand what you mean now.

Well, I told my pcp about having a weird feeling when rolling over with my left foot and feeling weaker when standing on my left toes than when doing the same thing on the right side. He then checked my reflexes, said they were normal and sent me to the neurologist for a nerve conduction study.
The neurologist did a clinical exam as well (reflexes and things), asked me to stand on one leg and then lifting myself onto the toes while standing on one leg. He could tell that it was a bit harder on the left side (still possible without a problem but a bit weaker). Is that not what is meant by clinical weakness? My ankle feels weaker at times and du do my calves after walking for a while.

He then did the nerve conduction test with the other things (forgot the names) and detected the nerve damage in the f wave.

After I had asked him (second appointment where he took the blood) whether he did not find it necessary to do an emg he said "no" since there was nothing that asked for it and the MRI showed changes around the spine area that seem consistent with a nerve damage in that area. Whatever that means.
 

ShiftKicker

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Footers, please read codyclan's response above. It explains.

Your neurologist has detected nerve issues generated by spine problems.

Your final sentence "Whatever that means" indicates you need to speak to your neurologist for clarification if you have questions.

You have been cleared of ALS and all future questions about your symptoms should be directed to your medical providers and not strangers on the internet as those medical providers have all of your test results and have conducted clinical exams and can provide information specific to your needs.
 

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Dear all,

thank you very much for your patient replies. I've tried to calm down the other days, however there is one question stuck in my head and I just wanted to ask weather I understand it correctly.

I have read that a distal onset is usually the case and I've been having trouble with a weak left arm for over four months now. By now the weakness has spread to my left hand which I notice through shaking/shivering while grabbing things and holding things. I know that this is not failure. The problem with the left leg has only been noticed by me within the last 7 weeks.

My question is whether it is unlikely for ALS to spread from arms to legs without any failure in between so does there actually have to be failure in the arm/hand before the leg is effected?

Thank you so much for taking time to read this.
 

KarenNWendyn

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We don’t see ALS in your post. Your neurologist also does not see ALS in you. You have somehow decided you have it and seem to be trying to make a case for it despite what your neurologist tells you.

At this point, I feel you should address additional questions to your neurologist who can examine you.

There’s really no point in us answering your question about ALS spreading from arms to legs. You haven’t described failure, your neurologist is apparently not finding failure, and the absence of muscle function failure points away from ALS.

So keep working with your neurologist. You don’t need to be here.
 
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