New Here and Asking for Advice

Status
Not open for further replies.

Zack

New member
Joined
Nov 6, 2019
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
BC
City
Vancouver
Hello,

Firstly, I would like to thank in advance anyone who reads and responds to this post. It is greatly appreciated. I am a 34 year old male living in British Columbia Canada. Over the last 5-6 months I have been experiencing pain from muscle cramps in my left arm (minor) and my left leg (daily and multiple times a day). This was followed by widespread fasculations (muscle twitches) in my face (below my left eye and around it), both of my shoulders and arms, both legs, both feet and my stomach. The fasculations come and go except for the ones in my stomach which have been constant for over 5 months now. I was referred by my family doctor to a Neurologist in the summer and met with them in the early September.

The Neurologist performed a standard, but thorough physical exam in which she asked me to stand and walk on my toes and heels, raise my arms, push and pull my extremities with her applying force against me, sticking out my tongue and some eye movement exercises. She did not pay any attention to the muscle twitches as she said I could not have ALS as I was able to perform all of the physical tasks she asked without any problem. I was then told I probably have Benign Fasculation Syndrome and sent on my way.

I of course was happy and relieved to hear this news, but the cramping on my left side (especially my left leg) continued and the twitching also continued. So went and saw my family doctor again. He did some blood work to see if there were any deficiencies (which there were none – everything including thyroid and electrolytes and all blood came back good) and then recommended I take magnesium supplements and drink more water. Been doing both for over a month now and have seen no positive results. The cramps and twitches continue. Now I am an anxious person so I thought that this could also be a huge contributing factor as I have done enough research to know that such twitches can be caused by anxiety.

I ended up going to my family doctor two weeks as my daughter needed her flu shot (under 5 so pharmacy won’t do it) and he asked how I was feeling. I told him things had not changed so he asked me to take my pants off so he could look at my left leg again. He noticed twitching right away in the leg as well as in my stomach. He then did a measurement of my left calf to right calf and he noticed a 1.3-inch difference in their size. I then pointed out that the muscle behind my left knee was non-existent. While when I flex my right knee there is a large muscle that sticks out and connects my back thigh to my calf muscle. He stated that its actually a tendon in the back of my right knee that is not showing in the left. Not sure what to think of that as when I flex my right knee it sticks out in the back and the other does not. It actually hard to flex my left calf at all. He has since requested that the Neurologist see me again (which is going to happen on Dec 5)

My doctor also asked me if I worked out, which I do 2 times a week. I do odd weight lifting at my school’s gym (I am a teacher). This is not major workouts and I am in no way muscular. Lately I have had trouble working out for more than 20 minutes. I did note to him that I can do my exercises, but feel nothing on the left side of my arm and left leg when I do so and it has gotten harder. I can still walk on my toes and ankles although the ankles part has been tougher these days. The pain in my left leg happens all the time (my left leg always feels super tight), my stomach (just below my ribs continues to twitch) and any time I am sitting down my arms and legs also have twitches that last from minutes to throughout the night.

Just not sure what to think. Everything I read states that twitches are usually focal to the region being affected with ALS, but in my case the majority of the cramping is in my left leg and the twitches are in that leg, but in other places as well.

Yes I am worried and anxious. I am a young dad with a 4-year-old and another on the way in June. Wondering if anyone can give me their opinion or what I should ask the neurologist when I see her as last time I did not know what to ask so I just answered her questions and preformed the tasks she asked me to.
 
I wouldn’t be worried about ALS. Assuming you’re returning to the same neurologist, she has a baseline on you and can see if there are meaningful changes.

At your age, the odds are that the problem in your knee is mechanical. It’s not uncommon to have asymmetry, especially if there is a mechanical problem in one knee and not the other.

Depending on what the neurologist finds, an MRI of the left knee might be helpful.

The twitching means nothing.

I really don’t see ALS here.
 
Thanks Karen, really appriciate the response. I will bring up the MRI on the knee and see what they say. The knee itself has given me no problems. It bends find, but the calf muscle below it that has lost alot of its mass and is constantly cramping, but it might be a knee thing and I will bring it up. Do you think I should ask for an EMG or just leave it to the neurologist to decide. I will be seeing the same Neurologist, which is good.

I forgot to mention that when i do a Calf Raise for example I can them with my left leg, BUT I feel nothing in the calf itself. Its like the muscle is not there, whereas my ride side within 15 lifts I feel it in my calf.
 
Zack I don't think you are a doctor, so you would be best to ask these questions of your doctors and follow their advice, rather than poking about the net looking for ideas on what to ask them to do.
You don't have signs of ALS which is truly fantastic.

That signals that you should leave here and go back to your doctors and ask them what is next. All the very best.
 
Thank you Tillie. I will keep you all posted on what the Neurologist says. Thanks for taking the time to read my post.
 
Hello everyone,

I met the neurologist again last week. She performed a nerve conduction and EMG on left leg and left arm (this is where I am feeling my symptoms) as well as EMG in two places in my spine. It all came back in normal range. She did see the fasculations, and noted mild atrophy in left leg. The leg has been cramping more then anything and has been pretty painful. She has ordered blood work (creatine kinase test). She did physical exam and I was able to do every movement she asked. She wants to see me again in 4 months to compare again. still no exact answer to what is going on with my body but I feel that with clean EMG and nerve conduction that it’s not ALS. Thank you for your time.
 
Thanks for letting us know. I’m glad to hear you’re cleared of ALS.


(mod note- closed for multi id)
 
Last edited by a moderator:
Status
Not open for further replies.
Back
Top