Status
Not open for further replies.

Mike1086

New member
Joined
Feb 26, 2019
Messages
4
Reason
Learn about ALS
Country
US
State
CA
City
Los Angeles
Hi all,
First of all, thanks in advance to anybody who takes the time to reply to my post.

I am a 32-year-old caucasian man currently living in Los Angeles. My symptoms started about 8 months ago with some intermittent muscle twitching that I noticed on and off in my neck, biceps, legs, all over really. I didn’t think too much of it until shortly thereafter I started to experience acute generalized fatigue and muscle fatigue. I felt extremely tired and my limbs felt heavy. On top of that, I was a bit lightheaded and overall something just felt off. I also was having some issues with shortness of breath, and some occasional strange episodes when trying to go to sleep which included trouble breathing, waking up with sweats, hot or cold sensations in my legs, dizziness, and restlessness.

I’m aware these are not all indicative of ALS, but I’m including for reference. I went to a GP for the first time in almost a decade (long overdue, I know) and was diagnosed with hypertension and obstructive sleep apnea. I started taking 10mg of amlodipine for the high bp and was prescribed a CPAP for the sleep apnea, but never got started with it as the timing coincided with my wife having our first baby (almost 5 months ago now) and with the insane sleep schedule and the noise the machine made I didn’t think it was a great time to start using it. I should also note that prior to the birth of my child, I was a heavy binge drinker and smoker, both of which I quit cold turkey before my daughter arrived.

Anyhow, I seemed to be ok for a few months before and after my wife gave birth (October 17th, 2018) but just before new year the intense fatigue came back, and this time with more pronounced muscle weakness. The weakness is still more general than in one specific area, but I definitely notice it in my legs and shoulders the most. There is also an achiness that I get and can be in any muscle, and I have some joint pain with a lot of popping and cracking going on all the time. I am constantly exhausted, lightheaded, and just out of it.

I then developed a sore/dry/swollen throat feeling which persisted and still persists (about 2 months in now). My voice changed because of it and is now low and raspy, and I’ve lost some range on either end. The throat issue coincided with the return of the twitching, which is now more intense than ever, and these symptoms combined are what got me thinking about ALS.

Now, on top of all this, I am experiencing something peculiar which started in my right foot and ankle, and now seems to involve my leg. It started with the foot and ankle feeling a bit off, as if it were injured, or strained somehow, but I still retained a full range of motion. Now the feeling is in my calf as well, with some occasional pain and cramping. I am wondering if this is because of some strain being put on certain muscles that are trying to compensate for another muscle that has lost strength, or if I am walking in some new strange way that is too subtle for me to detect? I should note that the twitching is also more frequent and stronger in my right thigh and calf than in other locations. I’ve also noticed my posture is very poor to a somewhat extreme degree. I feel like I am always resting my chin on my fist, or slumped over etc.

I’ve been back to my GP several times and had almost every blood and urine lab under the sun - all clean. I mentioned all the illnesses that I was worried about (throat cancer and ALS being the two that brought the most anxiety) and she said she didn’t suspect either of those, but referred me to some specialists at my request. I saw an ENT and after he dismissed my cancer concerns, I specifically asked him about the possibility of nerve damage in my throat, which he did not believe was the case. Probably just anxiety, he said. My anxiety, I will admit, has skyrocketed since I’ve been having these symptoms.

I have an appointment in one week for an EMG and nerve conduction test, and I am trying to make a follow-up with a neuromuscular specialist. Sorry for what turned out to be such a long post, I just wanted to include all the relevant information. Thanks again for any replies and I will follow up with the EMG results when I get them.
 
Last edited by a moderator:

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,900
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Untreated sleep apnea (I gather you haven't used the CPAP yet) coupled with the sleep deprivation that a new baby brings is likely to make fatigue, poor posture, twitching and potentially even a sore throat (as your airway collapses in sleep) worse.

Quitting smoking and binge drinking, while commendable (props!), can strain your body as well, for a time.

There's never a "good time" to start the CPAP. Just do it. It should not be that noisy assuming it's a modern machine. You can adjust the pressure to start low and go slow depending on your response.

I think you know you don't have ALS, so this is really just a +1 for treating the apnea (which will also lengthen your life and therefore your time with your daughter) and working on your general health, including nutrition and stress. I'm sure your PCP will be happy to help, and provide appropriate referrals.

Best,
Laurie
 

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,813
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Mike, being that you have an EMG and NCS scheduled next week apparently
you have seen a Neurologist.

Did he/she tell you what symptoms concerned him/her to order an EMG?

Need to add: The Neuro who will perform the EMG will review the initial
Neuro exam of observation (atrophy), movement, strength test, reflexes,
Babinski, Hoffman and other tests.
 
Last edited:

Mike1086

New member
Joined
Feb 26, 2019
Messages
4
Reason
Learn about ALS
Country
US
State
CA
City
Los Angeles
Mike, being that you have an EMG and NCS scheduled next week apparently
you have seen a Neurologist.

Did he/she tell you what symptoms concerned him/her to order an EMG?

Need to add: The Neuro who will perform the EMG will review the initial
Neuro exam of observation (atrophy), movement, strength test, reflexes,
Babinski, Hoffman and other tests.
Hi there and thanks for the reply. I actually haven't seen a neurologist and my GP ordered the EMG and NCS. She also referred me to a Neuro-muscular specialist group at UCLA, but the way they work is that all the doctors confer and review your case to decide which doctor is best for you, and then they contact you to make the appointment. They have not contacted me yet. My GP advised me to try to get the EMG before seeing the neuro so they could better go over the findings with me, so hopefully I can schedule that appointment soon after.

Hi Laurie,
Thank you so much for the reply, I truly appreciate it. While it is reassuring to hear you, someone who has actually had personal experience with this disease, say that I should know I don't have ALS, I can tell you that I wish that were the case and there has been a lot of uncertainty. Even times when I've felt resigned to it. Maybe it is unwarranted in your infinitely more informed opinion, but I can't seem to put my mind at ease. Finding this forum has given me some comfort by hearing people such as yourself reply with such confidence to people such as myself, but I promise I'm not here to waste anybody's time. I truly wanted an experienced, informed opinion about my symptoms, something that has been hard to find. So with that I thank you again, and I will follow up with my EMG results.
 
Last edited by a moderator:

Clearwater AL

Very helpful member
Joined
Aug 28, 2013
Messages
1,813
Reason
PALS
Diagnosis
12/2016
Country
US
State
NC
City
Central NC
Your process to being scheduled for an EMG is somewhat unusual.

Again, a Neurologist who is about to perform an EMG needs a review
of a previous examination... what’s the initial examiner is going by.

Did your PC do any of the observation (for possible atrophy), movement,
strength test, reflexes, Babinski, Hoffman and other tests?

I’m not doubting you but you do have an unusual path to getting an EMG.

So many other posters here were not available to a short cut getting an
EMG without going through a Neurologist first.

I hope your EMG affirms that you do not have ALS. I hope the
neuromuscular specialist you will be referred to also affirms that you
do not have ALS after the EMG. It’s putting the cart in front of the
horse but I hope it works out for you.

Hope for the best news from both
 

Mike1086

New member
Joined
Feb 26, 2019
Messages
4
Reason
Learn about ALS
Country
US
State
CA
City
Los Angeles
Yes I was a bit surprised as well as to how everything transpired. I told my GP about the twitching and perceived weakness and asked her if she thought it was worth it to see a neurologist. I mentioned ALS had crossed my mind. She said she didn't think it was ALS, but ordered the EMG and referred me to the neuromuscular specialist anyway. She did not conduct any kind of basic tests or anything on the spot, but on my referral for the EMG she just wrote "non-specific twitching and muscle weakness in legs" so hopefully that is enough to go off of for the Dr. performing the EMG. In the few days since my last reply, something odd is developing with my legs. What started as a strange kind of "dead" feeling in my right foot and ankle has since spread to my entire right leg. I'm having a concerning amount of a crampy/achey feeling and stiffness. My knee joint feels weak and my whole leg sort of feels like jello. I maintain full range of motion, however, my leg feels like it could give out at any point. I am aware this doesn't necessarily point directly towards ALS specifically, but thought I'd include it since it has recently developed/progressed.
 
Status
Not open for further replies.
Top