Is this ALS?

[Westlawn]

First, Thank You to all of you that run this site and for taking the valuable time it takes to respond to these messages. It is with great consideration and after several months of visiting this forum that I have decided to post.

Earlier this year (March) I had trouble swallowing food, and would have the sensation that food was getting stuck in my throat. I would rarely choke, but it was a noticeable difference. I saw a gastroenterologist who advised that I had GERD and prescribed me acid reflux medicine. I initially did not take the medication and did not change my diet and the problem went away for a couple of months but is now back. Which leads me to believe it’s not related to GERD. In that time I’ve had two barium swallow studies that show the food is going down my throat but the second test showed issues with the transition from esophagus to my stomach. The speech therapist declined to advise what the cause was and said to follow up with neuro and gastro.

Additionally, I have for several months (maybe April) experienced tightness in both my right and left calves. It doesn’t matter if I’ve walked a great distance or not, the tightness is there. The tightness was initially intermittent and would at times alternate from right and left, and then at times it was both of my calves. More recently it has been much more persistent the last couple of months. Within the last few months (August) I’ve noticed a steady decline in weight loss to my thighs, legs, and feet. My clothes and shoes no longer fit in those specific areas. And most recently my wife and I have noticed a very visible indentation to my right lower leg just above my ankle. My legs were already very skinny but now they are becoming more frail what seems like by the day. I have weakness throughout my legs.

I have completed 3 MRIs (lumbar, spine, and brain) and CT scan and all came back normal.

I’ve had blood work completed by my PCP, neurologist, and rheumatologist which have not produced anything to signal this is a related to some other condition.

The neurologist completed the test where he watches you walk and then looks at your strength, etc. (not sure what that is called) and he also completed an initial EMG and NCV in my right and left leg and my right bicep. The EMG found a slight abnormality in my right shin area. He advised me that I have idiopathic progressive neuropathy and told me to follow-up in 3 months (initially visit was in Oct.) He advised me that I did not have ALS or MS, but did not speak to my muscle loss and weakness in both legs.

Fast-forward a few weeks and I became alarmed when my wife and I noticed the indention in my leg, the additional weight loss in both legs, and the onset of twitching throughout my body. I recently completed a follow-up visit (a month after initial) and he completed a shorter EMG and advised the second test confirmed the first findings. He also advised that the muscle twitching was present on the test and said it was likely due to benign fasciculation cramp syndrome. He was not able to speak to my leg muscle loss and the indentation and said he wasn’t certain (based on 2 visits) that the indentation wasn’t already present.

I have now made an appointment with a second neurologist in the hopes that he will be able to speak to the continued leg muscle loss and what appears to be atrophy to my lower leg. The appointment is set for early December and I fear that by the time the appointment comes my body will already have confirmed that I have ALS.

I worry because from what I read a misdiagnosis is given roughly 40% of the time and idiotic neuropathy is often given as a diagnosis.

I genuinely thank you for reading my message and for any providing any response.

 

[affected]

As I read through your post, I think you may have missed reading this.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

Tightness, weight loss and dents are NOT ALS symptoms.
You actually had a physical exam and an EMG and were given a diagnosis. That diagnosis included telling you that you did not have ALS/

I'd like you to just stop a moment and consider that you have taken all that, added in symptoms that don't relate to ALS and attempted to pull a factual diagnosis around to become a terminal diagnosis without any of the hallmark symptoms. I don't quite understand why you are focusing on this, but it is taking over your objective, rational thinking abilities.

Take a breath, step back, and focus on living for the next few weeks. Then don't ask the doctor if you have ALS, just present your symptoms and believe what they tell you.

All the best, you really are doing all you can to find something that simply isn't there.

 

[Westlawn]

I want to sincerely Thank You for the time and effort that went into your response. It is greatly appreciated. As I said previously, I posted only after reflection and a lot of thought. My intention is not to upset or offend. I’m just very scared with these body changes that aren’t being addressed by the neurologist or any of the other doctors and tests that have been performed. I worry that maybe I’m “too early” and the progression of these symptoms will eventually lead to a diagnosis.

My EMG was not completely “clean” which again makes me wonder if this is just the beginning stages. My concerns are that the tightness (which I assume is spasticity in my legs) was not addressed by the Nuerologist. He also did not address the obvious weight loss to both of my legs (thighs, legs, and feet) which I assume is atrophy. Additionally the dent I referred to in my lower leg was is what I understood to be atrophy.

My understanding is that spasticity is the result of upper motor neuron failure and the weight loss/atrophy in my legs is due to lower motor neuron failure. And this would point to ALS.

I’m not pretending to be a doctor, and if these issues had been addressed I would not further inquire about them. But at this point it seems all over explanations have been exhausted.

I genuinely apologize for any ignorance on my part (google will only take you so far).

I Thank You for your time, and I appreciate any and all responses.

Thank you.

 

[Nikki J]

Tightness is not synonymous with spasticity. It is actually a fairly poor descriptor because it is indeed hard to describe. However it is readily seen on physical exam so if the neurologist didn’t find it your tight feeling is something else. Even if you did have it ( which apparently you do not) it is not unique to ALS

weight loss similarly is not synonymous with atrophy and loss in multiple areas as you describe does not at all sound like it.

if you care to share your emg report ( deidentified) we could address that but you were apparently told you have idiopathic peripheral neuropathy which can cause sensory disturbances and for that matter atrophy. this does not look like ALS on emg and I question your 40 % statistic

peripheral neuropathy is very common. ALS is not. Doctors know what they are doing I refuse to believe that 40 % of those initially diagnosed with peripheral neuropathy have ALS

by all means seek a second opinion if you are unhappy with this doctor but your statement about all other options exhausted is utterly untrue

 

[lgelb]

Yeah, Google will only take you so far...into the weeds. Or the swamp.

Stop Googling, start living. PN symptoms can be addressed with everything from specific shoes to PT. Chasing ALS isn't how to deal.

Best,
Laurie

 

[affected]

I'd like to assure you that we get a lot of people who skim read through the link I gave you and then start second guessing with things like tightness, being worried any single something on the EMG means they missed ALS, or that it was done too early, or that the neurologist didn't take you seriously.

I would like to really urge you to take those concerns back to your PCP and discuss how real these fears are for you. They can then work through them and either follow up something that needs it, or help you understand what symptoms or results mean.
Then they can discuss with you what is next in the diagnostic process.

Sometimes people feel really dismissed because they go in feeling quite certain they have a rare terminal illness. When you think this is really a big possibility, it can feel like you are just being palmed off. However, neurologists are really smart and highly trained, and find it hard to explain all the details of why what you are experiencing is not what you think.

Take a big breath, and put things in order, on paper, and make an appointment with your PCP, but don't push the ALS card as you simply don't have any symptoms of that and you want the doctor to concentrate on figuring out what is actually going on.

 

[Westlawn]

I sincerely Thank You all for taking the time to provide your perspectives and thoughts. I will follow the advice and will hopefully get the remaining issues addressed. As mentioned above, I have attached my EMG and NCV results. Any additional feedback is welcomed and appreciated. Thank you.

 

[Nikki J]

your emg was interpreted as normal. It is the nerve conduction that had the abnormality which was apparently mild and gives you the pn diagnosis . It is the emg that matters in ALS and ncs issues point away. They didn’t comment on that single fasciculation and increased insertional activity because they didn’t find it significant. Someone with widespread atrophy that you allege is present would have a very abnormal emg if it was due to ALS. You did not

please talk to your pcp and have them help you with planning your next steps