Back after 5 years - (merge old thread pls)

[CihanY]

Hello everybody and sorry for everyone who has to deal with ALS. I greatly appreciate this community and don't want to take away precious time from anyone, but I have some questions which I would like answers to from people who unfortunately have the disease.

First of all I was never supposed to come back here but my symptoms (going on for more than 5 years now) are still persisting/progressing.
I've had quite a good couple of years while still having all the symptoms which I described 5 years ago (especially twitching in every part of my body and issues with my throat). My muscle twitches were a lot less common over the course of the last 4 years but started being very frequent again (every 5 seconds in a different part of my body). I am 30 years old now and I know that it is very unlikely that I have ALS, but everything else either has been ruled out by doctors or doesn't make sense for my symptons.

In the last week I've visited a new neurologist whom I told about my history of symptoms and also about my fear of ALS. He did a couple clinical tests and also an EMG on three muscles which were all normal. But unfortunately he didn't look at my tongue, which fasciculates at rest and has little bit of atrophy on the right side (my own perception). Also the muscles on my hands are getting way slimmer which is most noticable on my right hand (neuro didn't take a look at it).

Therefore I was wondering: Tongue twitching is never a normal sign (even the neuro said it) but I do have them. But on the other hand I have fasciculations for more than 5 years but can still do anything. I still have issues with my throat, which I have to clear very frequently and sometimes my hands feel cramped up whenever I work too much. I know that you guys can't give me a diagnosis nor say anything about my issues without having seen my results. But I just would like to know if there is a possibility of me having ALS, even after all these years? It still scares me and I am very sure that I have anxiety issues, but I can't believe that twitching and having progessive issues could be nothing or BFS. People with BFS usually don't twitch all over their body nor they have tongue twitches, am i right?

I do not want to bother anyone but if you guys could give me an anwser for my question or maybe a recommandation what I could do next, pls do it.

I am very thankful and wish everyone nothing but the best.
Cihan

 

[Nikki J]

We don’t merge or reopen old threads. Dysphagia/Respitory onset

please review Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms
in it you will see our position on tongue twitches ( source mnd specialist who says tongue twitching is usually benign).
people with bfs certainly report twitching all over and tongue twitches. You can find hundreds of them on facebook and reddit

 

[CihanY]

Thank you for your answer and sorry for not reading the sticky note.

I'll have another appointment with my neuro next week and will hopefully get his oppinion on everything. If any of you have advice you are more than welcomed to reply.

Thanks all and wish everyone the best

 

[CihanY]

Hey, sorry to bother but a quick question: Has anyone experienced any silent reflux symptoms with ALS? For a couple of months now I frequently choke on my own saliva, my voice gets hoarse and I feel like I have acid in my mouth. Haven't had heartbun ever.

thanks, aprreciate it

 

[ShiftKicker]

Hi there-

If you have concerns about reflux (which is not commonly associated with ALS), this is something to ask your doctor about when you see them next and if they feel there is even anything neurological in nature going on. You will be seeing them next week, so it's not long to wait.

 

[CihanY]

A couple of internists already looked into it 5 years ago and pretty much found nothing. So it can only be something neurological, am I right?

 

[lgelb]

Did you last fill your car with gas or replace your furnace filter 5y ago?

Go back to your primary care doc. Bring a brief summary of the issues you have shared here, with approximate onset dates. You had a clean EMG and clean neuro exam. The idea that your problems have to be neurological does not seem very sound. But if your PCP hears alarm bells, you'll be the first to know.

 

[CihanY]

aight, thanks a lot. I come back here, whenever I have more details or a diagnosis.

Thanks all and take care.

 

[CihanY]

Im back again and I wasnt able to talk to my neuro, but I have a quick question for you guys: What kind of test would you recommend me to do to rule out/diagnose ALS?

my current symptoms are: globus feeling, permanent throat clearing, frequently choking on saliva and producing way more, shortness of breath after small tasks, different muscles get stiff, extreme bodywide twitching (also on tongue), smaller muscles on my right side (neck, arm, hand, thigh, calf), muscle fatigue.

Keep in mind that I've never had a thorough EMG (only 1-2 muscles each time) and no doctor/neuro has ever looked at my "preceived" atrophies nor my bulbar region. I've always been labeled as someone with anxiety issues before they really looked at my symptoms.

Call me dumb but aren't my symptoms really concerning for ALS? The only thing which speaks against it are my symptoms going on for almost 6 years now and my fairly young age (30).

I don't want to annoy you guys but I would like to have a definite diagnosis. What would you do if you were in my shoes?

Thank you

 

[ShiftKicker]

Hi there-

You sound really focused on this being a neurological issue, and that's not what your doctors have seen. You've been cleared by a neurologist within the last couple months and who saw zero concern for ALS, so you need to return to your general practitioner. Of course you want to have a definite diagnosis, but it's likely you are looking in the wrong direction. Your focus on ALS means you are not accepting what the neurologist has concluded. What has your gp suggested? You ask what we would do? I point you to what lgelb replied to you and ask if you have seen your family doctor yet.

 

[CihanY]

My family doctor was actually the one who referred neurologist because he said and I quote "it seems like there is something developing". Otherwise I wouldn't even have cared that much because I remember how shitty I've felt 5 years ago, when I was chasing an anwser for my symptoms and my anxiety levels rose to astronomical amount. And since I've done almost every test 5 years ago except for the neuro ones for ALS but my symptoms have progressed, it can only be that, or am I wrong?

As I've said before, I don't want to upset or annoy anyone but would genuinely like to know what I should do or ask for.

 

[ShiftKicker]

You have been cleared as of a couple weeks ago by a neuro, who has the training to detect neurological issues- it's literally their job. If you do not accept the results of your neuro exam and the clean emg, return to the doctor and ask for next steps. We wouldn't argue with a specialist here- we do not have access to your medical records, have not examined you in person, nor are we specialists. We can answer basic questions here (see Read Before Posting), but your best plan would be to speak with your doctor about next steps.

 

[CihanY]

Alright. Thank you for your reply and time. I really appreciate it.

I'll keep this thread updated.

 

[lgelb]

Your family doc referred you to a neuro, yes, but lots of people referred to specialists have no problem at all.

His job was to refer you out of caution. He did. The neuro doesn't see a problem. You seem determined that this is ALS. No one else is.

There may not be an answer at all. It certainly doesn't sound like the answer is ALS. You're asking how to get cleared, and we already told you that you are. There's not the uncertainty here that you are acting as if.

If a more extensive EMG will help you make peace with that, go get it. But there is no other test we can refer you to, off the top, that will provide a better answer. It depends on your medical history and exams. You've seen, evidently, multiple docs who had access to both and are not seeing the problem you are.

If you can't accept that the issues may be as much in your mind as body, going to another doc is just a waste of time. I suggest you see a counselor for a clearer picture of what could be physical and what might not be. Then see a good internist and start working on how you can feel better.

I'm closing this thread so you can focus on just that. Please don't open another unless/until you receive a clinical diagnosis that you can share.