ALS Fear - 9 months of panic

[Panos1978]

Hi Everyone,

Its the first time i am posting here.
I am 36 years old and generally a hypochondriac person but this time i am having a period of my worst nightmare.
Everything started 9 months ago with twitching on my right bicep, then spread in several other muscles. The twitching wasn't lasting for long but it was always there several times a day in different muscle groups.
After i read about ALS i started visiting neurologists and making EMG's - No one ever suggested that there was something wrong with me.
By January i already had 10 EMG's --- some found Fasciculations and thats why i tried to visit more experienced neurologists and this never stopped.
I got several reassurances by top doctors and by May i decided to calm down.
There were already 7 months gone and no weakness so i believed that the nightmare was over...
Unfortunately the case was different. 2 weeks ago i saw some twitches in my tongue especially after i move it and let it relax, i also feel that especially around noon i have some kind of dysarthria when i speak quickly in words with a lot of "r"s - This seems to be present only in certain periods, not continuously.
In addition i have also some minor cramping in my arches of the feet.
I went to neurologists again, had a tongue EMG too and again reassuring.

They prescribed me anti-depressants and i really believe that i need some help.

I am reading all over the internet about ALS and i am watching videos with people who suffer from that disease and my mind can't get in peace.
Twitches still exist in addition with the last symptoms i just mentioned.
I still check my strength in legs and arms everyday and i am in a continuous alarming mood...
I thought 9 months would be enough to get peace in my mind but it seems hard to achieve it as the symptoms don't let me relax.

Thanks for taking the time to read my long post

[LadyH]

Hi Panos,
I hope your day is going okay, and you're managing to stay as calm and upbeat as possible :)
I'd just like to let you know that I am sharing in your pain, and the way you describe things is very appropriate to how I feel too.

For about a month now I have been experience ALS type symptoms and I am so freaked out, have been at my wits end. I wake in the middle of the night in a sweaty panic, and lay there and check that all of my arms, legs & fingers are still working, I then get a second of relief that I'm not paralyzed yet! and it all starts again....

It is constantly on my mind, I don't get a moments rest from the horrible negative intrusive thoughts.

"I am in a continuous alarming mood" this is a great way to put it.

I actually saw my doctor on Tuesday, who measured my legs and did a neuro & strength test etc. I like & trust him, and he said the exam was "Totally normal", but it doesn't shake the fear.

My "skinny leg" (which is thinner, he measured and it is thinner "but within normal range" constantly has small painful spasms and kind of twitches, they never stop, they never go away, they never let me forget. I am so convinced this is muscle waste in the leg even though the doctor said only 3 days ago that it isn't. This combined with the fact I've lost about 6 KG in the last month or so, and I cannot see where from, other than the leg.

These thoughts cycle in mind on constant repeat and I cannot get away from them,

Sorry for going on about myself in your post, it's party because I am unbelievably self centered and self absorbed at the moment, but also so you know that I feel very similar to you, I really hope we're both just "crazy" and nothing worse!!
Hx

[Serenity1990]

http://www.nomorepanic.co.uk/showthread.php?t=157366

What you describe sounds like BFS not ALS. This is a condition very much associated with anxiety.

[whiteformula98]

From what I heard, ALS hits you like a MACK truck. I am two years in to my health anxiety and what is always a constant is my twitching. Today it is mainly in my right shoulder but it spreads throughtout my body. I use to take anti-depressants but do not like the long term health effects associated with them. I have gotten my twitching under control before but when I let negative thought creep into my head my breathing patterns start speeding up and my twitching starts.

[Panos1978]

LadyH, there is always a small difference between the two sides of our body. I also had similar issue with my right calf (dominant) is 1cm thinner than the left. When i realized it (8 months ago) i was in shock but until today it is the same so i guess that it has always been like that.

---------- Post added at 06:29 ---------- Previous post was at 06:24 ----------

Thank Serenity, i hope you are right. I mean i had so many consultations and Neurologists visits in addition to numerous EMGs and all were normal... 9 months i believe is a long time BUT when you start feeling new symptoms and start reading about other people stories who developed ALS you start panicking again....
My thoughts of ALS don't seem to have any logical pattern but are driven from my panic and fear. The problem is that i can't get away.
I had in the past several phobias about other illnesses but this is really a nightmare

[Serenity1990]

ALS causes such a catastrophic decline and it's so rapid that I very much doubt one neurologist would have missed, let alone several over a period of (I'm guessing) months.

[Panos1978]

Yes. Its true. But as i said there is no logical pattern here... Panic and fear is the worst!

[Serenity1990]

Sounds like you know the truth deep down. ;)

[RoseEve]

If it makes you feel any better most of us have had the ALS fear at one point. Muscle twitching is so common. Especially if you have anxiety. I have BFS, it's annoying but harmless. I had a very bad time at one point with ALS fear. I had the twitching and perceived weakness. I would do the strength tests everyday, measured my legs etc... You will get through it :hugs:

[Panos1978]

Yes. It's so similar. I check everything. When I'm convinced for one part of my body then the symptoms move to the next. For example over the last few days I believe that my masseter muscle is weak because I easily feel a tightness and tiredness when I talk or smile. Reality is that this comes probably because during the night I chatter my teeth from anxiety and that's why the muscles are tired... But always my mind goes to the worst scenario. Bulbar onset!

[RoseEve]

I also went back and forth between the two. I would imagine I was slurring or having trouble swallowing. If you need someone to talk to please feel free to message me.