Am I at the beginning of the diagnosis journey?

[Johnster]

Thank you everyone for the support you provide on this forum.

Like many, I ended up panicking after fasics started suddenly in one foot and then in the face (I was never subject to them), I did read all the "READ ME FIRST" here and it helped give me reassurance. My GP also did not seem to worry and gave me some magnesium & vitamin D.

However, as days passed I started to feel a strange sensation that I could not use all my fingers the way I wanted, one by one they seem to respond not as good as before, especially index and thumbs: I can do what I want but it feels harder to do it exactly how I want without thinking about it, like when holding a fork, I could feel something was off, sometimes I shook my hand to try to remove this feeling but with no success.

Standing up seems more difficult, I don't feel I have weak muscles but that keeping my balance is harder than usual, I have to think a bit about it. It's like the body being a bit drunk while the brain is sober.

Now, my GP told me I seem to be anxious, but I know my body never responded like that, I also know I was probably never that anxious. Fasics are increasing to the point that sometimes it opens my mouth on one side uncontrollably. Every day I try to calm down, but every morning I'm slowly reminded with all the stuff that is getting wrong (and wronger every day), fasics starting again strong in the same locations, "perceived" lack of balance and accuracy in tasks...

To add to that, I'm feeling my brain is not 100% here, my thinking is not as clear and I see it when I'm performing tasks at work or communicate with my colleagues.

I don't really know if my story is remarkable, I will schedule an appointment with a neuro but if you would like to offer any suggestion I am very open to it. I know I have anxiety, but I know you can also be sick and anxious, I would like to know if from your experience all of that could be related just to anxiety or would require digging further.

Thank you again for reading and for all the support you provide,

 

[KimT]

Once you get your appointment, make sure you write down ALL your symptoms and a timeline. Also, include any illnesses you've had such as Covid. This will help your doctor point you in the right direction to get to the bottom of it.

Don't go down the ALS rabbit hole. Let your doctor(s) figure it out. Googling symptoms leads people to wrong conclusions.
We're not doctors but you might try eliminating caffeine, drinking more water, getting restful sleep, and doing something for anxiety.

 

[Johnster]

Thank you for the advice.

I have another question regarding this situation, despite trying not to spread the worry to spouse and family, what would be the best ways to protect them?

 

[KimT]

I'd protect them by carrying on with your life and just letting the doctors do what they do. Stay busy. Focus on your family and do things you all enjoy.

 

[Johnster]

Thank you for the support

I had the appointment with my neuro, he did a few tests and did not seem to be worried about anything, which is good news but he told that he cannot guarantee anything, he scheduled me two exams, I don’t exactly know which ones but one will look at the brain and the other at the nerves.

Meanwhile, I can feel that I am losing strength, I am quite worried about this even though my anxiety is down and I sleep well.

Maybe I am paranoid but I already did voice banking and ordered an eye tracking device to start training just in case, my worst fear would be to be disabled by the time I get to the exams as the strength loss seems to progress at a quite steady pace.

Please feel free to provide any advice or reassuring word. Meanwhile I keep being busy with my life but it’s hard when every morning something is going a bit less worse than the previous day.

 

[Johnster]

So, things are going ok for now, symtpoms seem to get slowly worst but not as fast as I expected, I thought I would be in a chair by now but I can still move everything.

However movement seem sloppy, it's felt in both hands, a bit in the arms but mostly in the legs, where the walk is not feeling normal. My phone says walking asymetry and all the metrics are ok, I can still do 5km runs but the muscles feel off.

Fasciculation in the feet are now very light, but there is some kind of pain or cramp where fasciculations were, just in this one feet, hard to explain how it feels, never had such thing before.

Anyway, I have my first round of exam coming next week. Stress is wayyyy down but I wish symptoms could stop increasing, reminding me there is something going on, just about when I forget to think about it.

Anyway, thanks for reading if you had the patience to do so, I hope there is nothing serious going on, fingers crossed.

 

[lgelb]

If you can "forget to think about it," that's another sign things are not quite so dire as you might worry. The mind has a habit of refocusing on your concerns even when the latter are not justified. Substituting other activities, such as your passion activities/projects, can be helpful.

I anticipate your tests will be reassuring as regards ALS or anything like it. If voice banking and ordering eye gaze have reduced your anxiety, so be it, but I would also consider counseling to parse whether there is something addressable in the long term, that underlies your concerns.

 

[rmt]

You did voice banking? You bought an eye-tracking device? Wow, take a minute to think about how high your anxiety must be for you to spend all the money and time to do those things. You don't even have any voice symptoms or issues with your arms. What would make you think that you needed to rush to do voice banking or buy an eye-tracking device?

You thought you would be in a wheel chair by now? Think how high your anxiety is for you to think that, especially considering you are still running 5k.

My advice is to talk to a professional about your health anxiety. Regardless of what your upcoming exams find, you seem to have a very high level of health anxiety and that is something to address.

 

[Johnster]

Thank you for your replies, I appreciate it a lot.

I agree I might overdo things a bit, I believe I am worried by what's happening to my body, which I never experienced before and which has absolutely no explanation for now.

I'll keep you posted, for now I am going on with my life and try to forget about it, hoping the tests will be ok.

Thanks again, if it ends up turning good, I'll work on fixing my anxiety.

 

[Bestfriends14]

Work on fixing your anxiety today, not "if things turn out good." Your level of anxiety is one of the highest I've seen on this forum (you bought an eye gaze???), and oftentimes, when it is this at this level, it takes a lot of time, work, and dedication for it to abate. There is no time like the present.

Good luck to you.

 

[Johnster]

Thanks for the replies and advice, anxiety is definitely one thing to tackle. I am seeing a professional to discuss all of this since this started, it should help me a bit.

I had appointment with the neuro and he performed 2 test : EEG (electroencephalogram) and Evoked Potential test, all fine, but I don't think any of them can spot signs of ALS. He suggested to monitor things, if symptoms wouldn't subside or get worse, to come back in a couple of months and do an EMG.

I never told him I was afraid of ALS, I am too ashamed for that, thinking that it would seem like an over reaction, but in the meantime I see my body acting very strange with no explanation in sight.

I hoped he would have performed the EMG first, but now I am to wait. I still feel that permanent twitching in the right foot, sometimes it throw is some kind of pain, and twitching goes up a bit in the leg. Strengh still seems to be going down but I don't have any tool to measure that, it's just a feeling, every couple of week it seems to gets worse, I can kind of feel a change in balance and overall strengh when doing things, but I have no proof.

But well, what can I do except live my life and try to forget about this for now. I will probably do another appointment in a couple of months, so far symptoms never really got better in the last 2 months, I hope they will in the coming 2 but without much hope.

I'll keep you updated, hoping for the best.
Thanks again for your messages, I appreciate you took the time to write these replies.

 

[Johnster]

Hello again, short update a few weeks after the last one, unfortunately things did not improve on my side, more twitches (my right feet is still twitching 24/7 but there is intermittent twitch now in other parts) and more perceived weakness.

I understand only a doctor can diagnose clinical weakness. But I assume there must be « stages » in terms of clinical weakness? Can it be « perceived » and after it gets worse, it becomes easy to see something is wrong / it can be diagnosed?

I am asking because I feel that perceived weakness (only increasing for the past 2 months) body wise, especially in arms and legs. Even if my neuro cleared me 1 month ago (no EMG performed though), I’m wondering if I should push to have an EMG done because things don’t improve.

Weakness without twitches or twitches without weakness would not worry me, but the combination is a bit worrying.

I should finish that I felt what is real muscle weakness in the past, when I lost too much weight drastically due to a separate issue and I was under my normal BMI and couldn’t stand or walk too much, my muscles and joints were killing me at some point due to the lack of strength, they would get tired quickly and lack endurance, walking 2 miles was next to impossible.

Now this feels different, it feels like the muscle is not 100% there, not weak, not painful, but that it’s a bit more struggly to do anything, the balance has changed, and it doesn’t really get better, there is some « stabilisation » and the body adapts but then it goes worse 2 weeks later.

I meditate, I do sports, I try to forget about all of this and keep up with my daily life, it’s just that when I feel like I reach a new step of weakness, things look bad again because I see really no improvement.

If you have any further advice please feel free to share and thank you again for reading.

 

[rmt]

Have you seen a doctor/therapist for your health anxiety?

 

[ShiftKicker]

As rmt has posted to you, please go see your doctor about your concerns. We always advise that people visit with their medical care providers if they have symptoms they are worried about. You have not felt any reassurance here, despite our efforts, so it is time to go see a doctor in the hopes they will be better able to.

 

[Johnster]

Thank you again for your time, you are right, you did all you could to help me and for now only a doctor can help me further.

I will see my neuro again, and I continue to see my therapist regularly.

I have limited hope as I feel this weakness growing over all my body, but I try to enjoy each day the best I can, each day lived can’t be unlived right?

I’ll be back to give you an update.