Hoping for the best

[emcatalone]

Hello Everyone,

Any help or insight would be greatly appreciated.

In November of 2024 I started experiencing bi lateral thigh weakness. This is still the case as of this post. I can still walk well each day with no other issues in the legs/feet. Slight weakness in bicep/triceps region but not like the legs.

In late February 2025 I started noticing muscle twitches in legs and arms. I also started having trouble swallowing at night as I believe it was excessive saliva and it felt like a lump in my throat as I swallowed. This also accompanied a shortness of breath that has been on going as of this post.

I had a EMG and nerve conduction study at a very good clinic along with a visit to a neuromuscular doctor 10 days ago. The EMG and Nerve study came back normal and the doctor was convinced it was not ALS, but I am still worried that it is and it was a bit early to be so sure. I will be going back to the same doctor tomorrow for another assessment and evaluation as the breathing part really scares me especially being 5 months into my symptoms.

I have had all the normal blood labs completed and all came back normal…had spine and brain MRIs and they came back normal. Still waiting on blood labs for Myasthenia Gravis and should have them back in 5 days.

Certainly anxiety and stress had set in for the last 3 months so I am sure that isn’t helping with the symptoms.

Any insights, similar experiences, or thoughts are appreciated!

Sincerely

 

[lgelb]

Did you have pulmonary function testing? A sleep study? Your PCP can order those as well.
I don't think the EMG would be too early from what you describe.

 

[emcatalone]

Thanks for your reply. Had the pulmonary testing and all normal there, but did not have the sleep study done.

Just odd the swallowing and breathing issues occurred relatively soon after leg weakness. Concerning as a common symptom of MND.

 

[lgelb]

But your breathing relative to ALS is not concerning given normal PFTs. If there were deficits due to ALS, they would show up on the tests.

On the other hand, if your breathing is compromised in sleep, that could cause discomfort during the day, as well as magnifying any other physical issues.

A postviral syndrome is another possibility. I would ask about testing for inflammatory markers, along with a CBC and CMP, and any other labs that are due.

 

[emcatalone]

Wanted to follow back up from initial post….

I had a follow up with my neuromuscular doctor last week and he reevaluated my muscles and reflexes again and still could not determine a cause to my symptoms of arm/leg weakness, muscle twitches, shortness of breath, and swallowing discomfort….and still feels there are no UMN or LMN involvement based on the clinical evaluation and EMG from first appointment which was only 2-1/2 weeks ago and my appointment last week. The appointments were with a major academic clinic in Ohio so I respect their opinion for sure, but still skeptical due to the symptoms.

My only question at this point before I take the wait and see approach the next several months as symptoms remain is does anyone feel my current noticeable symptoms could be strictly all UMN involvement at this point and didn’t approach the LMN yet? As stated in previous post the EMG came back normal which only detects LMN involvement.

Certainly strange having major symptoms of ALS since November 2024, but an experienced neuromuscular doctor keeps saying there is no evidence of UMN or LMN involvement. Will the LMN involvement come in a few months?

Thoughts and feedback certainly appreciated

Sincerely

 

[Nikki J]

What symptoms do you feel indicate umn involvement? I don’t see anything you mentioned. Also umn involvement is detected on clinical exam and if a neuromuscular expert said there were no signs then apparently your exam did not show any so why do you still think you have some

 

[emcatalone]

Nikki J,

Thanks for your response.

Can’t the symptoms I mentioned above all start as solely UMN involvement then involve LMN later as things progress? The clinical exam did involve checking the reflexes associated with the UMN and they were ok but is it possible the symptoms I currently have are all UMN while the clinical looks can be ok?

Thanks again for your input

 

[lgelb]

So now you have more reason than before to look for systemic issues as per above, and to stop worrying about an MND.

You talk about "symptoms," but which one(s), if any, did the neuromuscular specialist appreciate clinically? It sounds like there were no clinical motor deficits.

If a specialist says you have no motor neuron problems, you don't have any -- not UMN (clinically detectable as Nikki points out) or LMN (also clinically detectable and seen on EMG).

So you're not in some preliminary phase of ALS.

 

[emcatalone]

Igelb,

Thanks for your response as well. The reason I am still nervous is the fact that I have done all the blood labs including Myasthenia Gravis, MRIs, ultrasounds, Ct scans, including seeing an nose, throat, ear doctor and nothing is pointing to the cause of the symptoms I mentioned. In my mind it would be hard for a neuromuscular doctor to assess my current symptoms clinically which is why I asked if they could be strictly UMN without LMN involvement now since my EMG is normal….keeping in mind my initial symptoms only started 4-1/2 months ago. Could it be too early for LMN involvement.

 

[Nikki J]

There are certainly people whose ALS started as umn disease but they had abnormal clinical exams showing umn abnormalities. By your report you do not have any of those signs. So this question is really irrelevant to you. You are free to disbelieve us and your highly qualified doctor but no matter how you ask this we are not going to tell you any different. A normal clinical exam means no umn signs.

 

[emcatalone]

Nikki,

I certainly respect your feedback and everyone else’s on here as that’s why I joined the forum.

At this point with the sudden symptoms I described and looking extensively at other causes without success the symptoms are UMN at this point. The clinical exam testing all the reflexes that scored 3/4 are certainly opinion and another specialist could say 4/4 which is hyper reflexes which are UMN involvement.

I will see how things progress with the symptoms and keep in touch of the outcome.

Sincerely

 

[lgelb]

Hyperreflexia is NOT necessarily a sign of MND. There are other causes, many benign, often simply normal variants.

I don't understand why you think a specialist would find it hard to assess you. That's what they do for a living.

I hope you don't let your misguided self-diagnosis hold up your life.

 

[emcatalone]

Certainly understand your input, I guess just the fact that the symptoms are all related to MND….they came on all of a sudden after being completely healthy with progression, and the fact that I have been trying hard to improve the symptoms with excercise, etc without success….and nothing else test wise is showing a reason for the symptoms.

 

[lgelb]

That is actually a very common scenario, from the PoVs on this forum, but with the clinical input you describe, have not added up to ALS or anything equally severe.

 

[emcatalone]

I appreciate the feedback and responses. I will certainly keep everyone updated as I learn more from myself and additional opinions from academic neuromuscular doctors/tests.

I think the forum is a great resource as people can share their questions and outcomes so others can learn and fully understand their situation so thank you all for that.