Not sure where else to turn

[Zipzipzip]

Hi all,

I want to follow the example of others and thank those of you who spend your time answering questions for a group that is predominantly anxious. I also feel ashamed to be posting here and apologize in advance if my questions have been answered previously. I have read the sticky over and over and over for comfort but am still choosing to post as I feel I have encountered some contradictions in reading that post and closely following the experience of a friend and neighbor who was diagnosed with ALS a little over two years ago.

My first question is regarding an EMG. After a couple months of leg weakness, I have had a brain MRI, a CAT scan, several blood workups, and an MRI of my entire spine (upper cervical, mid-thorasic and lower lumbar), my PCP finally recommended I receive an EMG. I have an appointment this coming Tuesday. The problem is that I noticed the EMG is going to be done by Physiotherapist/Osteologist and not a neurologist. Is it even worth my time getting the EMG if it is not from a neurologist and preferably one who deals with ALS frequently? I assume if the EMG has abnormal results, this doctor will refer me out to a neurologist. I guess I am wondering if you feel I should skip this one and wait a few more months to meet with an actual neurologist instead? My real fear is being told something generic like “it doesn’t look good but you need to see a neurologist” . I think I would rather not know and then have someone I am certain has the expertise give me a more thorough exam.

To say my anxiety surrounding ALS has been completely debilitating would be an understatement. The past two months have been some of the worst of my 35 years of life and as a father of four kids under 9 years old, I have crippling fear that I might not be around for them. For those who might read this that have endured that reality I cannot lend you my heart enough…

My symptoms started a few months ago with a “feeling” of leg weakness. I know that the sticky specifically calls out “failing over feeling” but this is one area where I am a bit confused. My neighbor was diagnosed years ago but his symptoms started with a feeling of weakness before gradually worsening into failure of his right hand. So while the failure did technically happen “all of the sudden” It took months and months of progressing weakness before the failure actually set in. Am I missing something here?

My legs have never felt this weak and I first began noticing it when walking up the stairs. I am very active with CrossFit and in tune with my body and physiology. To ease my mind, I have gone and done heavy sets of front and back squats to prove to myself that I still have strength. I was glad to be able to execute squats well above 250lbs but I noticed that my legs fatigued much quicker and took much much longer to recover than they ever have before.

Another way I might explain it is that instead of feeling that sore, tired feeling I used to feel after a leg day, I now feel what can only be described as weakness in its place. When I run, I feel like my quads are dead weight. Again I know the sticky specifically mentions running and failure but this sensation is entirely new for me. Is quad/thigh onset ALS a thing? I know twitching is never a good indicator of ALS but in addition to this weakness I clearly feel, my right thigh feels weaker and twitches incessantly and I see fasciculation’s in patterns and waves that I have never seen before. Seeing those sends me down the anxiety hole over and over and over again each day.

My left leg now has a similar weakness and intermittent twitching but I definitely feel it in my quadriceps/thighs more than anywhere else on my body. I haven’t noticed any atrophy and I have yet to be told by any doctor or family member that I am exhibiting signs of “clinical weakness” but I am beginning to struggle more and more with walks, stairs, and certainly any kid of exercise. I also notice my joints in my foot and ankle, as well as my knee feeling sore and uncomfortable which my brain wants to tell me is from compensating for weakness in my quads.

At the end of the day, I know this post is only reassurance seeking which doesn’t solve any problems for the anxious. I do not plan to post again or to elaborate on any other symptoms unless asked to do so but I do welcome any feedback or thoughts you all might have. I’ll be honest in that any reassurance goes a very long way for me right now but it is not your job to make me feel better. I thank you if somehow you made it to the end of my very first internet post ever and wish you all the very best.

 

[affected]

The EMG is a tool and the results show hundreds of possible conditions or injuries, ALS being one of them. No matter who runs the test, if you have ALS it will show.

You can argue the feeling v failure til you are exhausted but we don't have the time to do that. We stand by the sticky, why would we waste time arguing in text with someone we can't see?
We will say, see your doctor, follow through with the tests they order, and either believe them or get another opinion.

Please do let us know the results of the EMG and diagnosis and I wish you the best.

 

[Zipzipzip]

Thanks very much for the reply. I’m planning to proceed with the test and hoping for the best. I’m definitely not looking to argue with what is laid out in the sticky regarding feeling/failure. Who am I to say anything to the contrary of the experts here. I am genuinely just curious after watching my neighbors experience be a bit of a slow progression. According to the sticky, the failure seems to be the consensus so I’ll definitely take that as encouragement. Thank you again.

 

[affected]

If your neighbour had not experienced failure, then the feelings that preceded would have meant one of the hundreds other things it usually is instead of ALS.
What you are doing is like saying - yes but my neighbour with a brain tumour had headaches, and I have headaches so it probably is.

All the best.

 

[Zipzipzip]

Hi again, I had an EMG this morning after months of waiting for the appt.

I got an "all clear" in 14/15 muscles that were tested today. Unfortunately, in my right quad, the muscle that has had by far the most twitching (hot spot) and the one where I appear to "feel" the most weakness, came back with an abnormality. The Dr. Said it did not read on the machine as a "fasciculation" but did show a "positive wave". He used that verbiage out loud to me on two occasions stating that due to the lack of any fasciculations, he was not concerned about ALS. I wasn't shy about my health anxiety so he continued to reassure me and said that, "had I come into the appointment and he done the test completely blind, ALS would not even be a part of the picture". He indicated that the reading was more consistent with that of a pinched nerve or something else over fasciculations related to ALS. He then told me to, "try to chill" and live my life because usually these things "will resolve themselves and be forgotten". He did, of course, follow that statement up by saying that if it got any worse, I would know it and we could cross that bridge later.

I desperately want to take this news as positive and move on, but the problem is, I have already received an MRI of my entire spine, which showed no evidence of a pinched nerve. I've also had all my blood work ups done, and there is nothing to indicate that I have any sort of nutrition deficiency or any other problem. He did not elaborate on what else it could be if not a pinched nerve, but as my leg continues to twitch and feel weakness, I can't help but feel like there could still be something more sinister going on.

I’m grateful for to know what I know now and I am absolutely going to try to follow his advice and move on but as you all know, that is sometimes easier said than done. My anxious brain wants to latch onto that one dirty reading and make the whole appointment out to be a confirmation of my deepest fears.

Thank you advance for any thoughts shared. I genuinely can’t believe I am posting in ALS forms online. This is very out of character for me, but I am also so desperate to move on with my life that I don’t know where else to turn.

 

[Bestfriends14]

You need to turn to a professional to help you through your anxiety. You 100% do not seek solace from terminally folks or their caregivers, as they already have a ton to deal with. Again, please turn to a professional to give you guidance. You've been cleared of ALS, so there's not really much anyone on this forum can do for you.

Best of luck to you and take good care

 

[Clearwater AL]

Zip... "I desperately want to take this news as positive and move on, but the problem."

Once again the... BUT. The countless times we have seen this from "Could this be ALS'ers"
who can't seem to accept a ALS clear diagnosis from a highly educated highly trained
neurologist. It's time to believe and accept.

"I got an "all clear" ( Beginning of just second sentence. )

No need to reply. As said above... there's nothing more this forum can help you with.
Get help with your Health Anxiety. So you can live long and prosper.

 

[Zipzipzip]

I appreciate the replies. I wasn’t looking for anybody to give me reassurance, so I apologize if that’s how I came off. I was just following up with my EMG results as many have done before me. Definitely going to work on the anxiety with a professional and I really appreciate everyone here who spends time trying to help those of us who are can’t seem to stop chasing the tail. To @bestfriends, point, I re-read my last post and felt very ashamed that I made my remarks all about me to a group of people who are dealing with a real diagnosis. Apologies for any offense, as that was not my intent. Thank you all again and best wishes. Moderator feel free to close this thread.

 

[lgelb]

Just to close the loop, and then I'll close the thread.

There are many relatively harmless causes for a single muscle's acting up (like your R quad), that will not show up on an MRI. If you skinned your knee, that wouldn't show up on an MRI, either.

And the fact that the one muscle out of 15 that shows signs of nerve damage is the troublesome one is actually a good thing for two reasons: (1) An EMG in ALS typically shows widespread abnormalities, including muscles that feel fine, and (2) There are many more common reasons for twitching and perceived weakness than ALS, that are very treatable, so that kind of an EMG supports even more strongly a limited problem, not a disease that affects potentially all voluntary movement.

If your issue persists, you can ask for a PT referral.

Best,
Laurie