Recommendations

[Jselliott07]

Hi. I don’t know how to post on a thread after it’s been closed, I don’t want to open a new one but not sure how to do it. If someone knows how to merge these or wants to tell me I can try and do it.

Sadly I am still in the same boat as before, just progressed. My right leg is continuing to have issues, along with swallowing difficulties and body wide fasciculations, and a somewhat newer thing is continued shortness of breath (not related to Covid or any viral sickness), and right hand thumb issues. The breathing is even causing my sleep to be affected. There’s so many symptoms to name.
My question is, does anyone have any great doctors or clinic recommendations in the Midwest?
My current neurologist isn’t with the ALS association, and he is actually referring me off to get a second opinion from someone else. I think the new doc is called a neuromuscular/movement disorder doctor.
I know the doctor you choose is huge and I’m worried I haven’t been with one that is familiar with ALS, so I want the second opinion doc to be one knowledgeable with this. He is the same one that has done my emg as well.
If not I can google someone, but figured I’d check here first. I am open to traveling if reasonable as well.
My second question is does the emg show issues internally (like the breathing and swallowing issues), or are those all secondary tests like a swallowing study and breathing exam. I know it’s not like they stick the needle in your lungs, so to me it seems like it can’t reach that far inside (if that makes sense.)
Thank you for your time!

 

[Nikki J]

Neurology associates in Lincoln was a trial site for tofersen I know. I don’t remember the doctor’s name but people in the trial liked him. What happened to Mayo?
swallowing should show up on emg of the bulbar muscles. Respiratory won’t but that should show on PFTs They used to EMG the diaphragm when they were trying diaphragmatic pacemakers but that isn’t done anymore

 

[Jselliott07]

Thank you.
Last I tried to get into Mayo I was denied. I haven’t tried since having more symptoms. My emg didn’t do any bulbar muscles, he did leg and arm, didn’t do hand either. I just hate having the emg done but am I right I’m guessing a new neurologist will want to do their own?
I’m just really scared the current one has missed it since he’s not knowledgeable on it, and I just wish I didn’t waste this time with him, because to see new neuro’s is like another 8 months wait minimum.
I guess there isn’t anything that can be done anyways, it’s all just so very sad.

 

[Bestfriends14]

J,

You've been after ALS for three years, with symptoms that have moved all around your body, but no actual failure. What is it with ALS has you so captivated? What can you do for yourself to let this go? It's really irrelevant at this stage about where you've been tested on your body or new or old neurologist. You really, really don't evidence this disease. Ask yourself honestly why you can't move past this. That's the question that is more important than any queries you have about ALS. I'm not meaning to be blunt but more honest with you.

 

[Jselliott07]

Thank you for your feedback! I appreciate it.
The fasciculations are all over but the areas of concern I’ve had are mostly the same, just worsened, and then some new progression added. No total failure yet of extremities, you are correct. Not counting in the shortness of breath and swallowing issues though.
If there was another diagnosis or explanation I would be so thrilled (as I know everyone here would be too for their own journey) and I pray and plead for that daily, but the issue of having these symptoms continue and worsen and no other explanation for it makes us stuck in this diagnostic limbo.

 

[lgelb]

You are not in a "diagnostic limbo," but in a dangerous trap of your own making. You are walking, talking, eating, and swallowing, ~three years past a clean EMG and negative exams then and since.

A neuromuscular specialist is an appropriate referral, yes. But think about your word choices. If even a primary care doc thought you were problematic in terms of breathing, you'd have had lung function tests, perhaps a chest X-ray, etc. You can get a neuro telehealth appointment tomorrow and there are online consults available with name-brand institutions. There are at-home sleep tests that any doc can order. Home pulse oximeters are available at every drug store. Etc. The barriers that you are citing to prove you are in "limbo" do not exist.

You were asked to post when you had new results, not new fears. And it was pointed out to you that many PALS have gone through the entire diagnosis-to-death cycle in the time you've been here. As you opened this latest thread, your continued comparison of your own situation to that of the P/CALS here, something you've been warned about before, has crossed into overt disrespect if only in terms of repetition. That you can't see that is a measure of your lack of objectivity.

I'm closing this thread. Please do not open a new one. I strongly encourage you to seek help for your health anxiety. Google No More Panic. Google health anxiety and your zip code. Go to a telemental health care portal and type "health anxiety." Talk to someone who sees you in person who can reassure you that you are still very functional.

Even if you have an insidious neuromuscular disorder of some kind, it cannot remain a secret if it is that serious, no? And most are much more treatable than ALS, which I'm betting my bottom dollar you don't have, despite your pathological insistence that it's the only possible explanation. As well, as one of our members (affected) often points out, you won't get these past years back, so why mortgage any more?

Best,
Laurie