Waiting on Neuro, scared.

[Kinabe]

Hi,

Thank you in advance for your time. I've read many of the posts here and I am in a similar situation.

My grandmother died at age 76 from ALS, and it has given me a lot of anxiety over the past 10 years related to it. I also had a more distant relative (a cousin of my father) who I believe also had ALS, so it may very well be familial.

I will also note that I have suffered from Health Anxiety for years, and have "convinced" myself over the years of a lot of illnesses....

So here's my story.

Over the past several months, I've had a lot of twitching present on my body in different areas. It actually started around the 1st of the year when I got inside from snowblowing and noticed the muscle that usually diminishes in ALS was twitching rapidly. It continued off and on that afternoon, but didn't return.

I then started getting a lot of twitching over the next few weeks in my feet, ankles, and calves. That peaked around the middle of February but has mostly subsided now. I also had random twitching at any place on my body, but not consistently. Just jumping around intermittently.

I also have a bad shoulder with a SLAP injury (labral tear), and I worked that shoulder hard for a few days roof raking show. For two nights that shoulder blade was twitching a lot at night and keeping me awake with fear, but it stopped after the two days and hasn't returned for over a week... hopefully that's all it was.

What has me extremely panicked now is something new. I started having a "weird feeling" on the front right tip of my tongue a few days ago. Yesterday I noticed when I curl/rull my tongue like a hotdog, that small spot on the front of my tongue first does the curl but then "sags" and won't maintain the curl on that one spot.

I went to the Dr when my twitching was really bad several weeks ago and they referred me to a Neuro because of my family history, but I can't get into the Neuro until May 7th.

Now I'm panicking every day and can't sleep well at night because I wake up with my heart racing etc.

I have no clinical weakness. I can walk on toes, heels, walk heel to toe, close 200lb hand grippers, do 30+ pushups... no clinical weakness.... I do feel like my muscles get more sore than usual in my workouts... but I believe that's not really significant for ALS...

The only weakness I have experienced is this weird thing with my tongue, and that spot on my tongue feels almost ticklish/tingly. The spot that feels weird is smaller than an eraser on a pencil. No twitching in my tongue....

Hopefully this is all anxiety related or explainable in some other way than ALS... I am looking forward to the Neuro vist, but scared...

Give me some hope here....

Thank you all and I'm not here to argue or convince anyone that I have something. I'm just sharing my experience.

 

[Kinabe]

Forgot to mention... I’m a 35 year old man

 

[Nikki J]

I am sorry about your grandmother. It was her niece or nephew you think but do not know had ALS? That is a little vague to be calling FALS. How is your father? 76 is old for FALS and the same genetic mutation if it were would be highly highly unlikely to hit a 35 yo

Twitching is meaningless and weird feelings are not the way bulbar starts. The oddity with your tongue does not sound like the beginning of anything either. Btw I assume you know that ability ( tongue curling) IS genetic ?

 

[Kinabe]

My dad is 64 and doing fine. He has 3 siblings and none of them have had ALS either. I have 7 cousins also.

My grandmother was from a family of 15 and no one else had it. Yes, I believe her nephew had ALS or some other kind of Motor Neuron disease.

I’m aware of the tongue rolling being genetic. I’ve always been able to do it. Still can, but that one spot doesn’t “firm up” like it did. I guess I panicked from that, thinking maybe part of my tongue was going dead as an early ALS sign.

I worry a lot because I’m the dad of 5 wonderful kids and I get very upset thinking of leaving them behind if this turns into ALs

 

[Kinabe]

Today I had a follow up appointment with my provider.

Last week I went in to the walk in clinic at my health provider because of the twitching, and that's when they ordered the appointment to the Neurologist, but I saw the doctor on duty and not my doctor.

My Dr and I spoke today and she decided that since I can't meet with the Neurologist until May, we should get the ball rolling and have as much data for him as we can.

I'm also feeling a little better since the twitching is down a lot from its peak in Mid January-Mid February, and I still don't have clinical weakness. That feels like a good sign to me.

She had my blood drawn to check my magnesium & calcium levels and ordered an EMG. Hopefully I can get the EMG done sooner rather than later.

She really helped me psychologically because she mentioned that she was tripping/stumbling for several months and then woke up with Drop Foot. Of course she was concerned it, but turns out her EMG and other tests confirmed it was a fixable nerve issue in her leg. She is now cured from the problem. That made me feel better because I know 100% if I woke up with drop foot after months of stumbling that I would have thought the absolute worst.

 

[Kinabe]

The Neurologist called today and said they can get me in Monday instead of waiting until May

Now I’m more frightened than ever.

What can I expect? The office says that he does a very thorough exam that lasts at least an hour.

I’m so scared right now. I guess I should be glad to see the Neurologist, but going just makes his all the more real that I may be facing the most devastating news of my life.

 

[KarenNWendyn]

I believe you can expect your EMG will be fine and will clear you of ALS since you have no clinical weakness or muscle function failure. But will you accept those results??

People often ask if their EMG was done properly or too soon. The answer is that even if only a few muscles are tested and come back clean that it was done properly. And it can’t be done too soon if you have symptoms.

Plenty of people who have a relative with ALS are terrified, and almost always things turn out ok. Please reread Nikki’s post.

Best of luck Monday. I feel confident things will turn out fine for you.

 

[Kinabe]

If the Neurologist clears me and my EMG is normal, I will most definitely accept it.

If my symptoms continue beyond that, I will do my absolute best to move on mentally and only return if I do have the clinical weakness in the future.

I have health anxiety over this, but believe me, I’m not one of these people who for some weird reason wants to convince themself that they have ALS....

Thanks all for your time and I will update the results of my appointment on Monday evening.

Wish me the est please.

 

[Kinabe]

I had my appointment today with the Neurologist.

He says that he doesn't think my Fasiculations and symptoms show ALS. He does not believe that I have ALS.

He said that, if I wanted, they could also do an EMG just to know with absolute certainty, but that it was up to me.

It seemed like he was more concerned with my anxiety levels and if the EMG would ease that anxiety than anything else.

I told the Doctor I would accept his professional opinion that I do not have ALS, and that unless something new accompanied my Fasiculations, I wouldn't be back for the EMG. He told me to go ahead and think it over for a few days, and that sounded good to me.

The appointment was over an hour and included a thorough interview as well as dozens of tests he put me through. Everything from testing reflexes and signs (babinksi, wartenburg etc.). Walking up and down the hallway normally, on heels and on toes. Testing if I could feel pricks all over my body with a little poking tool. He checked something in my eyes, had me follow his fingertip to my nose with my finger while he moved it around... all kinds of tests.

I am still concerned about my Fasiculations (beyond ALS fears) but I do have more peace of mind.

He said that he thought my Faisculations were most likely benign because....

1) not localized to one area
2) not persistent (they come and go) and
3) not accompanied by any weakness

He also said with ALS, my symptoms would not have improved. Over the past several weeks since the peak of my Fasiculations, they have definitely gone down at least 50%. He said when ALS begins, even if Fasiculations are a first sign, they do not normally go away. They normally remain and slowly move from area to area as weakness spreads.

He also asked me straight up at the beginning of the interview, "Ok, why are you here? What can't you do? What are you having trouble doing?

Of course, I had to answer "Nothing" because I don't have any presented weakness or cramping etc.

He said to try to manage stress and anxiety, continue a healthy lifestyle, and unless something new accompanies my Fasiculations (loss of an ability - clinical weakness - or severe cramping etc.,) that I should not think ALS. If that ever happens, I can get the EMG and we can take it from there to rule out anything with my spine, compressed nerves etc.

So thank you all for your time and I will do my absolute best to not worry about this from here on out and not worry about ALS unless a real present clinical weakness appears.

Does anyone have any thoughts or anything to add to this?

 

[lgelb]

It sounds like you had a thorough exam and so I'd take it and run with it. Only you know if an EMG is needed to calm your fears. If not, I wouldn't do it as it is not the most comfortable test.

 

[Kinabe]

I think I can run with it. I do suffer from health anxiety so I know struggles will come, but I need to stay rational and in control. If my symptoms change or if I am having an increase in fasciculations a few months from now, I will reconsider taking an EMG.

Thank you all for your time.

 

[AlexVZ]

Hey Kinabe,

I also went through the same thing last summer, full blown health anxiety that I had ALS. No matter how much anyone in my personal life or on this forum tried to convince me otherwise, I believed I had it.

My neurologist also said that she didn't feel the need for an EMG, but I opted for one anyways, just to completely rule out ALS and check for myelopathy from other possible conditions.

As someone else stated, it isn't a comfortable test, but for me, it finally put my 2+ months of worrying to rest.

I would encourage you to get the EMG done, if nothing else, it will put your mind to rest. For me, that was the only thing that would keep me from worrying. Just my two cents! Glad it doesn't sound like anything malicious.