Symptoms: How Far Back?

[rhythman]

I find this interesting:

Yesterday, my new neuro asked me to describe symptoms to which I responded "How far back do I go?". He said, "As far back as you can remember having any issues that you suspect may have been neurological." I told him that stuff started when I was 15 years old and recounted 30 years of episodes. I further explained that the new symptoms included searing ear pain, hoarse voice, trouble chewing and swallowing and weakness in all 4 limbs. He focussed on the voice and earache. He asked me to really think hard of any instances of voice problems or ear ache during the past few years. I told him that I noticed my voice 'crack' or change pitch for a few seconds while lecturing...but that was perhaps 2 or 3 times per year-since 2007 or so-and each time, clearing my throat fixed it. I also said that I've had a brutal earache off and on since this past March. He wrote frantically.

Why do this? I mean how far back do you look for issues thought to be related to als? Couldn't it simply have been a cold or fatigue? Everyone's voice cracks. I read a 2006 post last night by John in Newfoundland who said that he had issues in 1994 and was diagnosed in 2000!

I just find this fascinating because my symptoms have apparently appeared in the past few months, but maybe the occasional voice issues mean they've been there for more than 2 years. Trfogey said in a post that most PALS likely couldn't pinpoint the start of their symptoms. After yesterday's meeting with the neuro, I understand better why he stated that.

 

[halfin]

It does seem that your neurological history is more complicated than most people's. I'm sure the neurologists are struggling with the same basic question, is this a form of recurrence of your earlier episodes, or is it something new. That would be of fundamental importance in your diagnosis. No doubt one way to attack that question is to focus on how similar or different your current symptoms are from what you have had before.

I agree that voice cracking is pretty common, and ear pain is not that unusual either, so it does seem odd that he is focusing on these symptoms. But maybe there is some condition he is thinking of that affects these areas. One would think that the weakness is a more significant symptom, but I have read many people's stories here who have weakness but are not able to get a diagnosis. Often they just have to wait and see if it gets better or worse. I assume your new neuro has scheduled an EMG; that seems to be the most useful test in suggesting whether some form of MND is involved, or pointing them elsewhere.

 

[trfogey]

rhythman,

The reason that I said that most PALS can't really tell you when their symptoms started is because the earliest symptoms are so subtle that they are easily overlooked until you 1) have a diagnosis and 2) have experienced enough progression to recognize it when you see it. At that point, you can look back and see the beginnings of the ALS symptoms: the slight weakness in your hand that made it difficult to turn a slick doorknob, for example. Or the times you started catching your toes on the front of that high step on the porch -- that one particular step that everybody catches sometimes, but you suddenly started tripping over more often.

In your case, the symptoms you complain most about are anything but subtle and do not appear to be the result of motor neuron death as most of us who have been diagnosed with MND recognize the experience. When you say "limb weakness", you mean "more easily fatigued". Everything works properly at first, but you get tired more quickly than you used to. Your arm gets tired more easily when you're drumming, but you can still hold the drumstick at the end of the set.

When I say "limb weakness", I mean impaired function. I can only lift a spoon to my mouth if I prop my elbow at just the right angle to keep my wrist from flopping and spilling the contents of the spoon, whether it's the first meal of the day or the last. It doesn't matter how much or how little sleep I got the night before. Nor is it better on some days than it is on other days. It will only get worse if I try to do exercises to strengthen it, because those muscles are beyond therapy and I'll be straining the remaining muscles beyond my body's ability to repair them.

See the difference. My wrist is weak even when fully rested. You don't notice your weakness until after substantial exertion. My wrist has ALS weakness -- some of the wrist muscles needed to stabilize the position of my hand while eating are paralyzed and no longer respond to the signals my brain sends their way. So I have to prop my arm at a specific angle so that those muscles are not needed to stabilize the hand position, and other muscles that are still functional can carry the load.

Without a doubt, you have something wrong with you, but the chances of it being ALS are probably quite slim. Given the fact that your story changes every time you tell it here, I can only imagine how confused your doctors are by now. The best thing you can do for yourself is to stop trying to figure out what's wrong with yourself and let the doctors do their work. The more time you spend committing malpractice on yourself with Dr. Google, the longer it will be before you get the answers and the treatment you need.

Peace to you, trfogey

 

[BethU]

I agree with Hal ... it sounds like he is considering conditions other than ALS.

There is a thread on PLM in which people recount how far back they believe the actual onset (of ALS) was, and many feel it was lurking for years. However, this is 20-20 hindsight and the fact is that as ALS becomes obvious, we learn a lot more about some of the more subtle symptoms and realize we may have exhibited them for years.

HOWEVER ... your neuro's focusing on ear ache and cracking voice doesn't sound like he's worried about ALS. I take it as a good sign that a) a neuro is interested in your complete history (how rare is that?!?) and b) that he apparently sees clues to what else it might be.

It is always a good sign when a neuro considers you an interesting case! That means he'll listen.

 

[rhythman]

Thanks for all your thoughts.

trfogey: I appreciate your example about the difference between limb weakness and impairment, but I do have a question because of my ignorance. Didn't weakness and fatigue preceed impairment? I did note that the things I could do in September have become progressively harder. The phone now is 'heavy' and I have to keep switching hands. When I drive, I can no longer keep hands raised on the steering wheel, so they 'take turns' of a minute or so each. Climbing stairs is quite hard, but right now, I can still do it.
Is that not what you went though or did you wake up one day simply unable to do something that you could do the day before, with no progressive 'drop off'?

 

[trfogey]

rhythman,

Depends on what movements you are talking about. When my left pinky finger started showing its first symptoms, it literally happened overnight. One day I could type properly -- the next day I couldn't. How do I know? Because I was working with computers every day and typing my name required me to use my pinky finger, not to mention using the left Shift key. In other parts of my body, I have unconsciously compensated for impaired muscles by shifting the way I hold something in my hand, for example, so that I use my fingers more and my thumb less.

What I have specifically noticed is that actions that involve several muscles, like sitting up or moving an arm or a leg, tend to go away in stages. I think that is because I can make a minor change in position or technique and get one of the other muscles to compensate for the newly impaired one. That process happens subconsciously and I don't really register it mentally at the time. I might notice some effects from the new exertion in the compensating muscle, such as fatigue or soreness, but I have those symptoms in several places in my body every day, so how do I pick out the new instrument in the "symphony of suffering" so to speak.

On the other hand, actions that are dependent only on one or two muscles -- bending or straightening a finger, for example -- tend to go away "overnight". Since there are no muscles to compensate for the newly impaired one, I simply can't do the action any more. That makes a much larger mental impression and I'm aware of it instantly as I immediately try to find another way to do what I'm trying to do.

All of this having been said, I can't really answer your question in a way that's going to ease your mind. The main point I've been trying to get across to you for a while is that neither you nor any of us here are going to be able to tell you yes or no as to whether your symptoms could be pointing to ALS by gathering anecdotal information about what symptoms each of us have had compared to what you have. As this point in your diagnostic process, there are literally hundreds of things, either singly or in combination, that could be causing your symptoms. Your biggest challenge, at this point, is to be patient enough to allow your doctors to narrow down the field and get you the treatment you need.

In short, stop borrowing trouble. You'll have plenty of time to dig through this board for useful information later, after you have a diagnosis.

 

[Big Mike]

I have looked at my own experiences and medical records carefully, and I believe my earliest symptoms emerged around 5 or 6 years before my diagnosed.

 

[rhythman]

trfogey

I completely agree. I'm finding the wait frustrating and have to continue to be patient. I have been feeling progressively worse for a few months, and I guess I just expected the doctors to do a few scans, bloodwork, etc. and tell me what's wrong. I've become more anxious since the first neuro said that als was one thing he had to consider, and the ent said that everyone he'd ever seen with my symptoms had als.

You are also correct by suggesting that I am reading all these posts to get a diagnosis. I guess I'm hoping that I'll be able to read something and think "That's not what I've got", and feel better. Perhaps it's a mentality of just wanting to rule out als, and any other diagnosis will be okay.

rhythman

 

[rhythman]

I have looked at my own experiences and medical records carefully, and I believe my earliest symptoms emerged around 5 or 6 years before my diagnosed.

That's really interesting. Did things 'come and go' and then just 'come and stay'?

 

[Danijela]

"On the other hand, actions that are dependent only on one or two muscles -- bending or straightening a finger, for example -- tend to go away "overnight". "

In order to avoid confusion - there are no muscles in fingers. Hand moves by employment of "extrinsic and intrinsic muscle groups. The extrinsic muscle groups are the long flexors and extensors. They are called extrinsic because the muscle belly is located on the FOREARM. The intrinsic muscle groups are the thenar and hypothenar muscles (thenar referring to the thumb, hypothenar to the small finger), the interossei muscles (between the metacarpal bones, four dorsally and three volarly) and the lumbrical muscles."

My partner's onset of MND manifested itself through gradual loss of extensor muscles, which in turn meant that he could not straighen his fingers. Also, his thenar muscles disappeared gradually, leaving a hollow. This happened over a period of one year (gradual weakness, noticeable atrophy, significant impairment). Two years since the onset of weakness he still uses his left hand to type and hold objects, but his extensors are very, very weak. I guess if one throws in some upper motor neuron symtoms such as spasticity/paralysis then the movement becomes even more restricted. My partner can still wiggle his fingers, just.

I am amazed at how many people seeking diagnosis seem to have 'perceived' weakness, which I think is often confused with a sense of muscular fatigue. There are a number of strength tests that can be performed by a qualified physician to distinguish between perceived and actual weakness. Personally, I would want an educated opinion (or two, even three) on the existence of actual weakness, if I felt/thought there was any.

Dani

 

[trfogey]

rhythman,

If you were more able to maintain a sense of objectivity, I'd recommend that you do some serious reading about how ALS presents in its initial stages and how it progresses. There are many symptoms that manifest themselves in ALS, but they do so in specific sequences. There are certain symptoms caused by upper motor neuron dysfunction and death. Those symptoms appear in a specific sequence in a particular muscle or muscle group as the disease progresses. A different sequence of symptoms occurs when lower motor neurons fail and die. A patient is not diagnosed with ALS until both upper and lower motor neuron symptoms are seen in at least three different parts of the body. That takes time to occur because ALS progresses neuron by neuron, and many of our muscles have multiple neurons that control them -- built-in backup systems.

In a way, we can all be grateful that it takes so long to diagnose ALS. If ALS could present itself all over your body and show signs of progression in just a very few days or a couple of weeks, it would kill you in an equally short amount of time. It would be something more like polio -- one day you're healthy, the next day you're feeling sick, the next week you're paralyzed or dead. Thank goodness for small mercies, eh?

Once you stop counting your symptoms and marking them off on the ALS symptom checklist and, instead, start looking at what's happening to your body and how it's happening, you'll see that your symptoms and conditions are pointing in several different directions. There are lots of conditions that could explain why you seem to tire more easily. It could be a nutritional problem, a viral infection, a thyroid problem, or just a poor night's sleep. What symptom do you have that convinces you beyond a shadow of a doubt that you have ALS and not something more mundane like an underactive thyroid? Once you can come up with an answer to that question, you'll be on your way to seeing where and why your thinking is off-track.

Peace, trfogey