Having an awful day... EMG to rule out ALS cancelled and postponed...

So after a 2 month wait, the day I was scheduled to go for my EMG arrived. I didn’t sleep last night. I barely managed to find childcare for my kids while I was at the appointment... 7 more hours and it was all over, and I was on to the waiting phase for my results. Of course as luck would have it, I get a phone call this morning saying my appointment has been cancelled and postponed for a week. I’m devastated, crushed... My twitching has been non-stop and I’ve been experiencing horrible cramping in my feet. I’m crying putting my kids to bed every night, terrified of ALS. I needed to be on to the next phase. It’s been a 2 month waiting game of anxiety. Waiting another week for the EMG now, and yet another week for results because they are behind from all of the cancelled appointments is just such a cruel joke.

I want to feel like I can breathe again, without this terrifying fear looming over me...

I’m sorry you’re having a rough time right now, and I hope things get better soon.

I’m sorry to say this, but if your fear is caused by health anxiety, which I’m assuming it is since you’re posting here, then going to the dr to get this test won’t give you the relief you seek. It may for a short time, but eventually your anxiety will pick a new target to focus on and the cycle will begin again.

I understand that the constant twitching is very frustrating. But even if the test is put off for another week, there are measures you can be taking in the meantime to control your anxiety. Imagine how scary it is for your kids to see you crying every night. There are CBT techniques that you can be practicing while you wait that can greatly improve you and your family’s quality of life. As people with HA we mustn’t rely on lab tests to bring us relief. All that does is encourage the health anxiety cycle.

Thank you for taking he time to respond...

I should have wrote that I’m in tears after putting my kids in bed (almost 1 and almost 3 years old). I do my best not to cry in front of them.

I have been seeing a therapist to work on my anxiety. My Doctor wasn’t concerned until the muscle cramp I started on top of the twitching, so now I don’t know what to think. I am working on thinking more positively, but this morning was not what I was mentally prepared for in the least.

I am truly hoping all of these symptoms are caused by anxiety, but I don’t really know.

I just wanted to share my experience with you , which hopefully will be of help . I spent a whole year of my life in a deep state of anxiety that I had ALS/ MND . I had a catalogue of stuff going on which I convinced myself was als - twitching ( all over , with particular hotspots , especially sole of left foot and toes , cramping , burning / weird sensations in my legs , tremors/body jolts etc . I was so entrenched in it all , totally obsessed , I spent literally all my day looking up stuff on als , reading all the posts on the bfs forum . Trips back and for to the doctors . I was eventually referred to a neurologist ( for reassurance / not because of concern) , I felt I couldn’t wait on nhs so went private , the neurologist of course had no concerns , did not want to put me through other expensive and unnecessary tests like emg . I was reassured at first but I was in such a black hole with it all that my anxiety soon re-emerged , I ended going back to her 3 months later with what I felt to
Be yet other definite symptoms of als , again she didn’t bat an eyelid and restated my need to have psychological input . It’s hard to know what to say to someone going through this fear as I know the grip
It has on you , I could spend my time trying to give you reassuring facts about why you don’t have als , quote you eminent doctors etc , but problem is this won’t help you , in fact it just serves to fuel the obsession . It all lies in the anxiety , and the need to tackle this , it’s really good you are getting help for the anxiety , I also
Had therapy , I also went on anti depressants , tried several but prozac really seemed to help me turn a corner , along with forcing myself to not totally withdraw , I’m a mum as well and it was such a struggle , my obsession with this illness took me away from my kids/ partner , pretty much everything . It may seem like you will never get out of it but you will , not overnight , but you will slowly get there .