WHAT IS THIS?

[anxious182]

So a brief history of symptoms. This has all been happening since I was 17 and I'm 29 now:

2011 - Had a major panic attack at school, went home and went to bed, woke up the next day with weakness in my arm, not generalized, literally some of the muscles weren't moving right or moving as much. This caused my arm to feel heavy as well.

One week later it spread to another arm.

A week later it spread to my leg.

A week later it spread to my other leg.

Over the course of another month or two it spread to the rest of my body. Voice, diaphragm, facial muscles, etc. Nothing works normally anymore.

I was told by my GP that it could be psychosomatic, but I never got any other examinations done.

Fast forward a couple years.

I start having muscle dysfunction in both my hands, as in, the muscles will not contract correctly, I brush it off and keep living.

Fast forward a couple more years.

I develop an intense shakiness in my right arm every time I pick up an object. This lasted for close to a year, has since subsided, but the weakness described earlier that onset at 17 has never gone away.

Fast forward to last year.

I get COVID, and shortly after I notice that when my left arm is in certain positions it shakes, almost like a tremor, but it sometimes stops at rest and only happens in certain positions. It never really goes away though. Seems like muscle dysfunction and there is a bit of atrophy. It's accompanied by stiffness and there is widespread twitching throughout my body.

Fast forward a year.

I move across the country and start thinking of seeing a neurologist, when weakness progresses in my left arm. I can still use it, and I can still type this, but there's weakness, stiffness, etc, in both my arms. I have a loss of dexterity in my left hand and it's harder to move my fingers certain ways.

A couple weeks later I develop more stiffness in my right arm. I am also having problems swallowing and a light cough that comes and goes. I was sick two months ago, but otherwise have been healthy. Occasionally my diaphragm feels tight and it's hard to breathe when I lay down. There also is significant stiffness and fatigue in my legs and lower back. Breathing and swallowing issues seem to have worsened, and I feel disassociated from certain parts of my body. This all happened over the course of two months. The weakness exists more on the left side of my body than my right.

I'm scared and confused. I never saw a neurologist, but this isn't manifesting like ALS and obviously it hasn't killed me over twelve years. I have a history of mental health issues so FND sounds like the most likely culprit, as it seems to get worse after traumatic events or illness, but I can't shake ALS out of my mind, even though people on the ALS forum said this isn't how ALS manifests.

Can someone offer insight? Thank you!

[Lady4]

Hi, welcome

It sounds like you are dealing with a lot. Never heard of ALS so googled it. There are a lot of similarities but there are so many other things it could be.

You should have been referred years ago by your GP and given support with your mental health as not knowing just adds to your anxiety. You need a multi-disciplinary team to help you too.

Have you seen any medical professionals?

Hopefully some of my fellow members will be able to shed some more light.

Take care.

[CrystalBeach1]

My advice would be to go see a neurologist. Many of the neurology diseases and disorders have similar symptoms that only a neurologist can decipher.

[Beexo]

Hey

Im so sorry to hear this , what has been recommended for you ? When I first experienced my symptoms I went hospital and then they kept keeping me there with no answers then they suggested a neurologist who happened to find out what was wrong and gave me the diagnosis ( which took 2 years for them to do ) I think you need to go hospital and really stick on them and be harsh with them to help you , because they aren’t really educated on fnd it’s smth new to them and the more of us going and asking for help can make it easier for them to have a better understanding and for them to help us treat it , they mostly recommend therapy I’d say go private therapy if you can because nhs waiting list Is disgusting

[Beexo]

even if it’s AlS I think the best doctor is a neurologist , you can try a gp refer which could take months or just go a and e and wait to see one after a few hours