How does the Dr know.....

[rayray123]

Hi,

I just got off the phone with the als specialist. Those of you who know my situation (maybe not by choice) Sorry, but regarding my Darn pinky toe.......I saw a podiatrist today as suggested by the Neuro.

The podiatrist scared me even more. Said my other toes seem a little week too. He did a skin biopsy for a nerve fiber? Not exactly sure but he said my pinky has NO movement & its only one of 2 things, A muscle problem or a nerve problem.

He thinks I should also have a muscle biopsy. He looked concerned.

I called the ALS specialist after because I was worried & just so tired of worrying. He said dont get a muscle biopsy then Yelled at me, YOU DONT HAVE ALS & basically hung up. He said the emg shows it!

So, Im thinking how does the Dr "KNOW" that this WONT progress. How Does he KNOW that my DEAD pinky toe that has NO movement will not Progress, that he can tell me I dont have als?

Is it simply the emg?

Thanks,
A friend always,

 

[Zaphoon]

Yes, it is simply the EMG and absence of upper neuron signs as well. There may be something else going on but it's not ALS!

Could what you do have progress to other body parts? Possibly. Will it kill you? Possibly. But you won't be dead from ALS.

 

[Twinsmom]

Dear Rayray,

Having the podiatrist do a biopsy will give you more information. It's obvious SOMETHING is wrong, but there are a ridiculous number of other neurological/nerve/muscle issues that could be the case. Your symptoms DON'T meet ALS criteria.

Prayers for clarity and Peace,
Melody

 

[rayray123]

Just wanted to say Thank You. For all those that are always replying to my post I cant tell you how much I appreciate that you are kind enough to take the time!

Im sorry that anyone has to be here. Its amazing how today, in 2010, we can "connect" with people via internet & grow to care about each other.

The personalities on here are priceless! You are all VERY special!


So it is simply the emg? It always detects Als? Why dont they just put this in articles so that the MANY worried people can just get that information when they google?

 

[Erica]

Dear RayRay,
Please trust your ALS specialist, be happy you don't have ALS and get on with your life.
Erica.

 

[AndyDJX]

Rayray-- you're on a pointless search for absolutes. "So, Im thinking how does the Dr "KNOW" that this WONT progress. How Does he KNOW that my DEAD pinky toe that has NO movement will not Progress, that he can tell me I dont have als?"

It's very rare that you can KNOW something to be 100% sure, but you can make an educated guess.

I'm not going to get in an accident on my way home from work today. How do I "know" this? I drive carefully, I haven't gotten in any accidents driving home from work before, I'm not drinking or doing anything to increase my chances of getting into an accident. I can safely say that I'm NOT going to get in an accident tonight.

Do I KNOW this? Well, it's possible, but it's pretty damn unlikely.

The crazy thing is, the chances of me getting in an accident driving home from work someday are probably higher than the chances of you having ALS. You have a clean EMG, no upper motor symptoms, no atrophy, no signs of progressive weakness. This is how the ALS doctor "knows" you don't have ALS.

You need to stop framing your medical problem as a question of "Is this ALS? Yes/No?" You need to get this stuff checked out with your doctor. You may have a muscle problem, you may have a nerve problem, you may have a mild neurological problem. Do you realize how many potential problems I just included in those ambiguous definitions? HUNDREDS if not THOUSANDS. The more symptoms you have, the closer you'll be to a diagnosis.

For example, Lupus is notoriously hard to diagnose. One of the symptoms is mouth ulcers, something that is also caused by countless other conditions. No one would be diagnosed with Lupus because they have a mouth ulcer; that's insane. But if they had mouth ulcers + a butterfly rash on their face + severe joint pain + blood tests that show positive ANA + anemia + a history of miscarriages; that would point to Lupus.

What do you have? You have widespread muscle pain and a weak toe. Widespread muscle pain isn't seen with ALS and a weak toe certainly isn't how ALS usually presents itself. ALS diagnosis requires evidence of upper and lower neuron degeneration confirmed by both clinical tests and EMG tests and progression that spreads to numerous limbs. You need a doctor who sees weakness, atrophy, a dirty EMG, progression and solid evaluation of your history and symptoms. You have clinical exams that point AWAY from ALS. You have symptoms that aren't consistent with ALS. You have presentation that isn't consistent with ALS. And you have EMGs that show no signs of ALS.

That is how the doctor KNOWS you don't have ALS. Could he be wrong? It's possible, but unlikely. I don't sit here wasting my day with anxiety over whether or not I could die in a car accident on my drive home tonight, and you shouldn't let your mind become burdened with irrational fears over ALS either.

 

[rayray123]

Hi Andy,

What I mean to say is How does he know this isnt the begining of als & will progress?
How can a Dr say no als when my pinky toe only stopped moving 3 weeks ago?

I understand "how" they come to a conclusion of no als, WHAT I "dont" understand is how can he say no als SO quick when als is a disease of progression?

I hope Im coming through with this properly.

Many Many Thanks

Im sorry

 

[AndyDJX]

Rayray--- ALS doesn't usually start with toe weakness. Perhaps you can answer some more questions that will keep me from going back and looking at all your posts:

When did your symptoms first begin?

What are ALL of your symptoms?

How many EMGs have you had?

 

[olly]

andy, your explanation of WHY THE NEURO SAID RAY RAY DOES NOT HAVE ALS was just brilliant,well done

rayray,i dont wish to come accross in a bad way but in this thread and some others the answers are clearly there for you...............you keep asking the same questions over and over again.
please take time to read through the replys,think and reflect on them.................in andys post he clearly explained rather well WHY THE NEURO SAID NO ALS.

 

[rayray123]

Thx Andy,

A year ago, 10/2008 I had widespread muscle pain/fatigue & a crampy feeling in my muscles which the intensity would change from mild to awful! Lasted 3 months. It left and returned months later. It still comes and goes but it does go.
Ive had all the bloodwork......I realize this is not a symptom of als so I can disregard this. (Even I understand that).

My only symptoms is the weekness of the pinky toe. I have brisk reflexes of both knees & nothing happens with the babinski. My toes neither go up or down. (Both have been this way for awhile now) at least 2 years, to my rememberance.

3 weeks ago I noticed my pinky was drooping off to the side. It looks weird. I tried moving it but no response. I can feel it though.


Last year I had a thorough emg/nvc when the muscle pains began. It was normal.

2 weeks ago, emg/nvc but only 3 needles (1 in pinky, 1 in calf, 1 in thigh).

Thank you Andy!

 

[AndyDJX]

I think it's important that you DON"T disregard the widespread muscle pain fatigue that still comes and goes. Toe weakness isn't your "only symptom" it' just the only one that has you concerned about ALS. A diagnosis is sometimes like putting a piece of a puzzle together; your muscle pain is a piece that doesn't fit with ALS. That's something you want to pay attention to, not ignore! Don't worry about the brisk reflexes, seriously; that's super-common amongst the general population.

So let's look at your symptoms:

"10/2008 I had widespread muscle pain/fatigue & a crampy feeling in my muscles which the intensity would change from mild to awful! Lasted 3 months. It left and returned months later. It still comes and goes but it does go."

The first thing that jumps out at me is the fact that your symptoms began almost a year and a half ago. That's good news. The longer you go without serious progression, the less likely it is to be ALS. Like I told you before, ALS may start off subtle, but in the long run it's anything but.

The other thing is what we all know-- widespread muscle pain is not a symptom of ALS. But it is troubling; it is a legit medical concern. If you're trying to get to the bottom of this, it's not something to ignore.

Clean EMG-- always a good sign. scratch that, always a GREAT sign if you're trying to eliminate ALS from the list of possibilities.

Then in the past month the toe weakness arrived. Another sign that something is wrong, but it's not usually how ALS shows up. ALS patients usually go to the doctor first because they've been dropping things, slurring their words or tripping an abnormal amount. ALS causes weakness, and your toe is weak, but ALS doesn't usually show up with weak toes as an early symptom.

2nd Clean EMG. What's better than a clean EMG? Two clean EMGs!

There really isn't anything there that says ALS, but there are a few things there that point AWAY from it. I don't think you're a hypochondriac; it sounds like you have legit medical concerns. But on the looooong list of neurological/muscular/autoimmune, etc issues that could be causing your symptoms, ALS is at the bottom of that list.

I don't blame you for being worried or concerned, I just think your mind is giving a disproportionate of worry to ALS. That only makes you worry more because you start thinking of worst case "who will take care of my kids" scenarios, when that's just not rational at this point. A clean EMG at the beginning of your problems and then another clean EMG a year later is a very good sign.

Your doctors look at your case and don't see ALS. The people on these boards look at your case and don't see ALS. One of these days, you will agree with us!