Symptoms

[Anna0099]

hello everyone! I would like to start by apologizing for posting that message. I’m just desperate to get some answers that my doctor is not giving me (because he decided not to answer).
I’m also so so sorry that some of you have to deal with this. And if I offend you by my questions/post, I’m very sorry about that.

I had numbness in my whole right arm sometimes. But mostly, it is tingling, numbness, and a weakness feeling in my right hand. I used to have some fingers pain, and wrist pain as well. But it was a few months ago and It disappeared.
I went to see my physiatrist who ordered a MRI. The MRI says “There is broad-based disc bulge at CS-C6 abutting the ventral cord space but there is no cord compression”. So for him, it does not explain why I have all of these symptoms.

He then proceeded to perform the Phalen test which is for him negative. Now I have an EMG scheduled for the end of month. And I’m really afraid about the results, especially since he says he wants to rule out the tunnel carpal. Does it mean it could be ALS?
I have a feeling of legs and arms weakness but nothing more than that. I didn’t trip or fall. But it is just this feeling that I’m being weaker.
I also have difficulty to eat and swallow (tight throat, sensation of having something in my throat).

I have some twitching, but to be fair, It could be anxiety. I don’t know what muscles twitching in ALS look like.
I can speak normally, I have weakness in my hands and sometimes I drop things. But I’m still able to do everything.

how did your symptoms started for you? Does it remind you your own story too? Could it be early symptoms?

I read so many posts, some say it started as numbness; some say it is not sensory. I’m so lost right now… and I’m very afraid about what my EMG could show.
I have a young daughter that I would like to see grow up…

Thank you in advance. God bless you all.

 

[ShiftKicker]

Hello-

Please read here: Read Before Posting. It explains why things like tingling, numbness, pain all point towards something else and away from ALS. It sounds like you are in the process of getting answers. While we understand how hard the wait might be when you are looking for reasons, we can not provide you what you are looking for here.

You list things not associated with ALS, which I hope is reassuring. Your next appointment should provide some more insight and direction. If you have further questions about your specific symptoms, the person with the answers would be the medical professional who has examined you in person and can provide them based on their observations.

 

[lgelb]

Ruling out carpal tunnel syndrome and ulnar nerve problems, which are very common and treatable hand/wrist problems, has nothing to do with ALS. And not having cord compression does not mean at all that you do not have a hand problem.

As you say, sometimes a hand problem mushrooms into anxiety and some of your other issues can go along with that.

There is no reason to think you have ALS. I would work on getting more sleep, eating right, and getting enough exercise while you enjoy your daughter and await the EMG. Try not to worry.

 

[Anna0099]

Thank you both for your answers! I appreciate it! It helps.

 

[Anna0099]

Hello again, and I apologize for asking this question. I have an appointment with a neurologist on Tuesday, and I’m very anxious about that.

I read the “read before posting” and I understand it is not about feeling. But I don’t understand the clinical weakness: don’t you feel something first before having a clinical sign?
As feeling your leg is weaker, it’s more tired and feels sometimes heavier. Which is followed after by the clinical sign?

Again, I’m sorry for posting that post. And I really appreciate that you’re taking your time to answer to our thread.
Also, did the treatment help you if you are
currently taking the drugs?

Thank you…

 

[Nikki J]

No. As the sticky says it is failure not feeling. I still feel like I should be able to : stand tippytoe, walk on my heels, wiggle my toes etc etc etc. i feel fine things just don’t work

I am not sure what you mean by the treatment? There are 2 drugs in the US for non sod1 ALS (98% of us) they are supposed to slow progression. I think riluzole helps me but one can’t know for sure as an individual how we would be without a drug. Studies show they slow. They don’t make it better. Qalsody the sod1 drug in a few cases appears to have improved people slightly ( anecdotal but from neurologists) mostly it just slows or stabilizes and it is absolutely the best ALS drug so far

 

[Anna0099]

Thank you a lot Nikki for taking your time to answer I’m very sorry for what is happening to you. I do hope the drug helps you and I do hope the doctors will find a treatment soon. Thank you to all the people on this forum who are doing their best to help us, even if you are already dealing with a lot on your side.

( i apologize for my English, I’m not a native speaker…)

 

[Anna0099]

Hello again! I’m here because I had some tests done and more symptoms.
The left calf has lost some muscle, with stiffness/tightness. The left arm is very sore. Basically, the whole left side is sore and very fatigued.
I have twitches everywhere, lost weight, and am extremely tired in general. Harder to do things everyday.

I had one EMG done on the left side. It came back clear. And the neuro said the EMG detects 100% ALS so I don’t have it.
He also ruled out neuropathy and MS (I had brain MRI and spine done).

So I’m feeling anxious. All I hear is “you don’t have ALS, it’s too rare” or “the EMG is clear you’re worried for nothing”, “what you have is temporary”. But my condition has clearly changed. And from the stories I read; I know it’s a long process to diagnose ALS. You might need a few more EMG or even more years before having a final diagnosis.

I’m feeling like nobody is listening to me and taking me seriously.

Thank you for reading this post please keep in mind I don’t want to offense anyone. I’m just lost and feeling alone.

 

[lgelb]

There are thousands of progressive conditions that are not ALS. ALS is not a sensory disorder and what you describe does not sound like it at all.

If the neurologist does not think this is a neurological problem, he is the best person to know. So I would find a good internist (perhaps your physiatrist has a recommendation) and make sure systemic disorders are ruled out.

 

[Anna0099]

I apologize. I just looked on google to see the difference. I thought soreness and fatigue was similar.
So no soreness, but fatigue on my left arm, to the point it’s hard to hold a plate or do the dishes because my arm is too fatigued. Everything seems too heavy now.

Fingers are stiff too…