In the process of testing

[HappyGrl1]

Hello!
I am having neurological issues, which I believe stem from a fall I had down the stairs. However, one big issue I have had prior to the fall was waking up with stiff legs. I am 52 and walking like an old lady. That had gone on for about 1 1/2 years or so prior to the fall. A couple weeks or so prior to the fall, I noticed my left leg was feeling weak and heavy. I believe it gave out on the stairs.
I fell on my left side shoulder, hip, and banged my head pretty hard. The fall was a year ago. Since then, I've developed weakness, numbness in my left hand, which is also curling now. My fingers are curled. The beginning of the curling began during OT, with my forefinger. I now have atrophy between my forefinger and thumb.
My neurologist thought I was symptomatic of MS. It was ruled out by a clean brain MRI. I had a cervical spine MRI which shows a c4 nerve impingement, with a hemangioma and bone spur. I now need surgery on that.
When I rest at night or during the day because I'm also getting tired a lot, my legs (first began in my left, now in my right), I get spasticity..my legs come alive. It also happens in my abdomen, and left arm, shoulder and back. I've been getting muscle spasms in the calves, behind my thigh, and in my left hand.
I'm just wondering if anyone has any ideas as to whether this could possibly be ALS? I've also lost 5 pounds. And, I've had two falls (all on the left side) within the last two weeks. My husband and I are nervous. I go for my EMG on July 27th. Hoping to find answers.
Thank you!
Marie

 

[lgelb]

Hi, Happy,

With your complex history, it's probably not wise for us to prognosticate ahead of the EMG. Before the fall, had you seen a neurologist, or only after? Let us know the results.

Best,
Laurie

 

[HappyGrl1]

Hi Laurie,
Thank you for responding. No, I've never been to a neurologist prior to the fall. I read something that military personnel are 2X's more apt to develop ALS. I served for 20 years in the Air Force. I'm trying not to be thinking too hard until after the EMG. I just don't know if they tell you anything the day you get it? Would you happen to know? This waiting is nerve wracking. My left leg feels like it is getting worse. I lost my balance, again, last night, but fell backwards into a chair. I'm getting scared. Thank you!
Marie

 

[Nikki J]

Do whatever you have to not to fall walker maybe

Whether you get results from emg from the examiner depends on many things. Some of us heard then and there some were given strong hints others had to hear from their ordering physician. This happens whether the emg is good bad or equivocal. Good luck

 

[HappyGrl1]

Thank you so much! Hoping for the best on Friday.

 

[HappyGrl1]

Hi Laurie,
Just a quick question for you regarding my leg. Just to see if it is an actual symptom of possible ALS. I get what feels like a stiffening, then my knee sometimes will hyper flex in the wrong direction. My left hand fingers are really curled now. Trying to get to a neurosurgeon quickly to see what he thinks. Again...EMG is on Friday. It's going to be a long week. My husband was just recently diagnosed with Parkinson's Disease. Praying.
Thank you!
Marie

 

[Atsugi]

Marie, as Laurie said, it would be irresponsible to prognosticate on such a complex case.

But I'm not known for a great sense of propriety. So I've got some notes for you.

Right off the bat, I'm not seeing ALS in you.
Falls have never been credibly blamed for ALS.
If your stiff legs "warm up" and get better after waking, that's not ALS.
ALS legs don't feel weak and heavy. They just don't work.
Numbness has nothing to do with ALS.
This stuff here could be many things and isn't really saying ALS to me: "Getting tired a lot, my legs...spasticity, legs come alive...abdomen, and left arm, shoulder and back... muscle spasms in the calves..., behind thigh... and in left hand."

I wouldn't rule it out. We GI's do get ALS twice as much as civilians.

But here's some knowledge that you can use.

When a person has ALS, it's a disease in the brain, specifically in the MOTOR NEURONS (nerves) that control the VOLUNTARY muscle system. ALS will eat away at a nerve in the brain and destroy it. From that moment on, that nerve can not send a controlling signal to its muscle, so that muscle can't move any more--forever. It's not getting the "go" signal from its nerve.

So that muscle will sit, useless, limp, doing nothing. You can't make it move. It just doesn't go.

There's no feeling involved. You see, normally when a muscle feels weak, exhausted, fatigued or burning, that's because it worked really hard. But in ALS, the muscle didn't do anything at all, so it doesn't feel bad. It also doesn't feel numb, funny, or strange. It just won't contract anymore.

It is possible that an opposing muscle could spasm up, and overwhelm the stricken muscle. In this case, there could be a pain or a curling. Don't hear about that a lot.

But all those muscles? No. ALS attacks, basically, in a serial order, from one muscle to the next. Typically a finger doesn't button a shirt, then the hand is no responding, then the arm goes super-weak. Then maybe a toe, foot, leg, etc.

I don't really know what you mean by muscles "coming alive" but that's the best part of your post. ALS makes muscles limp, not alive. There can be little twitches, where you'll see or feel a little rolling-under-the-skin sensation, where a nerve is sending confused signals to its muscle as the ALS is eating up the nerve in your brain. But not jerking around with a big swing.

So I'm pretty sure you're looking at some damage that is not fatal, not ALS.

With one general caveat: Do not fall.
When a healthy person falls, they usually manage to instinctively turn their head, and tuck, buckle or roll an arm or leg quickly before hitting the deck. In this way, the body avoids the most serious injury.

However, if your nervous system is unreliable or slow, you might fall without any protection for your head, neck or hips whatsoever. 150 pounds dropping to the deck and slamming a brain case into the floor at high speed can kill a person, or at least make life really, really problematic thereafter. So, whatever you do--do not fall.

So, there it is. Not pretty, but doesn't look like ALS to me. Come back Friday. They probably will not tell you anything during the EMG, and they could be wrong if they did. EMGs show up bad for many reasons, not just ALS. ALS requires a lot of tests and considerations to make a "probable ALS" diagnosis, so you'll have to wait for the official results.

First up, since you're worried about a terminal diagnosis, buy life insurance. Call the VGLI people and increase your amount. If you later get a terminal diagnosis, you'll be insured and the insurance company will probably pay without argument. And if you later decide you don't need the extra insurance, you can always cancel. Finally, there are "no questions asked" policies. They have a more expensive premium, but you can always cancel after your diagnosis comes back with an "easy fix of the spine--no problem" diagnosis.

 

[HappyGrl1]

Thank you, Mike! Yes...I'm not going to stress! Thanks for all the information.

 

[HappyGrl1]

Hello!
Just a quick update: I went for my NCS & EMG Friday morning. The NCS wasn't too bad, however, the EMG on certain muscles really hurt. When the doctor put the electrode into the back of my thigh, I nearly jumped off the table. He stopped the test at that point (he was close to the end). I was crying from the pain of it, and maybe from nervousness (I don't like needles). He sat me up and stated he got enough data to be highly concerned. He didn't go into detail, other than to say he is calling a Neurologist friend who works at Columbia-Presbyterian in NYC. He said he wanted me to see a doctor more equipped and more expertise for what may be wrong with me. He said it outside his realm of expertise. I asked him if it was ALS....he said it a possibility of being ALS. So, now it's Saturday morning, and I have to wait until this doctor calls me this week. He also said what is concerning him is the fast progression of whatever it is I have. Feeling nervous. At least he was honest, but I don't want to have another repeat of an EMG, which he said was possible, as well, and that it would be more in depth, doing both sides of my body.
Thanks for listening.
-Marie

 

[lgelb]

Hi Marie,

Without knowing more about the EMG, I will say that getting into Columbia is a good thing, obviously, and of course you deserve the fastest answer you can get. Very sorry to hear about your husband's Parkinson's. The jumpy leg and much else could still relate to the C4 lesion(s) or there could be another process that affected the spine as more of a primary cause, even one that caused the fall.

So let's not jump to ALS; you will know more soon, though I know how long even the shortest wait can be. Try to enjoy the weekend with your husband and make some fun memories.

Best,
Laurie

 

[HappyGrl1]

Thank you, Laurie! Trying to do enjoy, but you're right....the waiting game is the difficult part. Have a great weekend!
-Marie

 

[KimT]

Marie,

Just want to mention a couple of things to do before your next EMG. If it is not contraindicated, take a couple of Tylenol or Advil. I've had a bunch of EMGs and most of them caused very little pain. If you're stressed out going into it, the pain will be worse. Breathe and relax during the test. A good, skilled neurologist should be able to do an EMG without causing much pain. If the room is cold, ask for a warm blanket.

Wishing you the best.

 

[HappyGrl1]

Thank you so much, Kim! I'm just hoping the doctor at Columbia will just take the results of the first EMG. Thank you, again!
-Marie

 

[HappyGrl1]

Good morning!
I received the report from my EMG (although it wasn't a complete EMG, as it was too painful for me and the doctor stopped the test), my results were 8 out of 10 of the needles were bad results. My walking is becoming more difficult now, and I think a cane is in order. The fasciculations are constant throughout the day and into the night. I'm lucky if I get a few hours sleep. My left hand, which is clawed is getting weaker. Trying to get an appointment for Columbia in NYC. Becoming more concerned.
-Marie

 

[Nikki J]

Bad results is vague and could encompass many things. Were you given more specifics? If you care to post the emg report ( both graphs and summary) with the identifying data removed we might comment more helpfully.

Columbia is an excellent place for an expert opinion