Scared

[Licco]

Hello everyone. This is my first time in here. I'm very scared.

Everything started in October 2015 with a twitching thumb on the left hand. At the time I was scared and I tought I had a brain cancer. Neuro said no.

Then I searched on Google: Thumb twitching... And I found about ALS, next thing I know, twitching everywhere! Then I had some stifness in my hands and my handwriting was a mess. I did go to see a Neuro again and he said that I'm completly fine.

2018: Still having fasciculations but they are only in my legs and sometimes at some random body parts.

March 2018: Diagnosed with Mitral Valve Proplase! I don't have any regurgitation.

Then I was focused on my heart and I was kinda depressed and sad. Then again I went to see a Cardiologist and he said I can do whatever I want, no limits, my heart is healthy.

I was happy and decided to go to see my sister in Italy. I was in Italy for one month and it was FUN!

While I was in Italy, I woke up one day and realised that my twitching is GONE! I was so happy, it was just EPIC to finally be free from fasciculations and many more symptoms were gone!

So, everything was fine until I decided to write on ALS forum that I'm doing great, also wanted to say thanks to them, beacuse they were really nice to me. While I was on ALS forum, I was starting to ask myself: What if the twitching I had is really from ALS and even if I don't have them now I will get them and BOOM, next thing I know my back is twitching and then I started feeling twitching everywhere, fine twitching like some gentle touching under my skin, then my TONGUE started and also is twitching in a resting position. So scared and lost.
Tongue twitching is stopped now but still I feel some twitches here and there.

Also today I'm scared to death beacuse while was drinking coffe I felt litle burining up in my throat and I think I also did have some coffe/water come in my nose very little but still. So i drinked too much water today and i could drink it fine but twice happend that water while i was drinking gone trough my nose little. not really sure that happend but still. Oh, forgto to add, almost 3 weeks pleghm in my throat. Some days are better the others but some are not. And also, I have problems with my sinuses.

I'm seeing new Neuro this friday.

And I don't know if Im an anxiety person but let's just say i feel little pain i start thinking its a cancer. lol ... Im 24 years old

SORRY FOR MY ENGLIHS!

[unicorndusy]

Hi there and welcome to the forum!

I completely sympathise with you as I too developed health anxiety around 2015. It comes and goes in my case, but be rest assured that your anxiety is most likely making you feel these normal, day-to-day sensations as scary and abnormal. I hope everything goes well for you Friday but I'm sure your neuro will re-assure you that you are totally fine. Your English is really good by the way!

unicorndusy

[Licco]

Thank you unicorndusy for your response!

Okay, so today I was with my neuro and he gave me an SSRI and some vitamins. He said I'm completly fine and I should only take this drug for a short period of time.

I'm scared to take an SSRI. Should I be scared?

[alex.roberts.pe]

Hello, Licco. This is my first post ever after lurking on this site for nearly a year. I just couldn't read this and not post. You sound so much like me after I developed a health anxiety around a fear of neurological disorders.

Also like you, the twitches and spasms worry me a lot even after reassurance from 2 neurologists. And even more in common, my symptoms seemed to disappear during a vacation last summer to France, Belgium, and Germany (I am from the States but don't hold that against me). :-)

Unlike you, though, I have an official diagnosis of OCD and generalized anxiety disorder. I do think from reading your post, however, that you do need to accept that this has probably moved beyond common anxiety in your case as well and work on treating that. I do believe SSRIs are worth a shot. They were working for me last year so well that I thought I could quit even though my doctor recommended a few more months. I should have listened as I am now fighting through a relapse and have just started SSRI meds again.

Best of luck on this uneasy journey so many of us are going though.

Alex

Sent from my SM-G892A using Tapatalk

[jaroslav.prossv]

Hey man, I think I will be a great help for you, because my "als worry period" ended not a long time ago, it lasted 6 months . My twitching was very scary, started in the tricep, where is was twitching for whole 2 month, with slight periods between. The is spread out a bit, and was very creepy in general. To be honest, your twitching sounds good, not too localized, more body spread, and it also spread out when you started worrying. I would be able to type more regarding twitching, but I think this is enough.

Here are some stats. Some neurologists say, IT IS IMPOSSIBLE TO TWITCH BEFORE WEAKNESS, unless you have trouble lifting basic items, walking on toes, walking normally, talking etc you likely don't have. Some say about 6-7% twitch before weakness. Now, I read an incidence article from Holland a lot of time, because it was reassuring. In four years, only 4 people were listed to be diagnosed "this young" even 30 is young btw for als. 0 at ages of 18-19 and 4 ages 20-24, this makes only 1 in a million incidence, this means that ONE IN A MILION OF 20-24 year olds get als. Now, we have your twitching as first symptom, so, if we divide one million by 0,06 we get 16 666 666. One in 16 million of 20-24 year olds. Now I suppose your flag is Serbian, so, in Serbia you have about 500 000 20-24 year olds, now you can calculate in how many year a 20-24 year old get diagnose with als presenting with twitching.


If you need more help, search aboutBFS.com (do a research on this condition and NOT ALS), however, these do not accept registrations, so if you want reassurance pm me and I ll send you a fb group, and the people will take care of you like they took care of me lol .


Hope it helped.

[Licco]

Alex, thanks for reply, it's really good to know that I'm not the only one with these odd symptoms. Stay strong. How long you are dealing with the twitching? I'm 3.5 years in. Crazy ride for me.

@Jaroslav Thank you man! I'm 3.5 years into twitching. I do have some other symptoms, like some minor cramping in odd areas of the body but they are very rare to happen so I don't think about them much.

My strenght is very good. I also gained some weight.

It's really intresting that my twitching started when I found out about ALS, I still remember that fear in me and next thing twitching all over.