Going through diagnosis and scared

[Dot1234]

Hi all,

I’m female age 38, about a month ago my first finger clamped down into my wrist and I couldn’t move it, it pulled my wrist down lasted a few minutes. After which my muscles in that arm felt weak like muscle strain.
About a week later I started to get muscle spasms in same hand and then just lost my strength and grip from hand all way up arm ( all of this was right side) I also started to get this thing that when I yawn my jaw kind of like spasms - can’t explain it.

The GP sent me hospital suspected stroke.
I had multiple mri scans and CT scans while there, see a variety of neurology doctors all of whom aren’t saying what is going on as just yet they said they don’t know. But they have ruled out stroke/ms. I was discharged after a week and asked to come back in about 6 weeks for an EMG and NCS test.

I’ve been having muscle twitches in various parts of my body for ages about 8 months plus and tbh I thought nothing of it.

It feels like my muscles are tight on right side and I have started to notice dips in my hand in between my bones. When I use my right hand I can feel a pulling like muscle strain in my upper right arm area. When I pick up my mug of tea it looks like pure bone on my hand ps enough strength has come back in that hand so I can pick up my cup of tea now - although it causes some discomfort- where as a week ago I couldn’t hold anything with weight in it. My right leg also feels odd - only way I can explain it unfortunately. And I’m unable to lift my big toe upwards I’ve also got some indent in my ankle/foot area that I don’t have on my left.

I have done the most ridiculous thing ever and googled my symptoms which has led me to ALS/MND
I know I need the EMG to kind of give me answers I have no idea how I’m going to wait 6 weeks now with this worry!

I apparently have brisk reflexes on my right and some thing my ankle did where they push it up and let go mine kept moving.

How do people cope with the wait I feel consumed by the fear and can’t seem to get passed it. Seeing as they ruled out lots of stuff whilst in hospital which I’m eternally grateful for as I also had extensive blood tests too all of which are ok ( a few antibody ones not back yet) I’m now absolutely stressed.

Do you usually lose the strength and it returns slightly? (It’s most definitely not back to normal but it’s better than it was but still have a very stiff hand)

Sending lots of love to all the people fighting this cruel disease

 

[Nikki J]

Usually in ALS you can not regain what you have lost. You might do a little better when rested but that doesn’t seem to be what you describe.
waiting is hard. Generally it is best if once you have prepared for your next visit ( and being just a test apparently you don’t have anything much to prepare) that you step away from researching and reading. Spend the time enjoying and living your best life. As you know worry won’t change anything. If this is something fixable/ treatable any worry would be wasted. If it isn’t then you have wasted your best days with worry. Spend your time doing what you love with those you love. Everyone should do that. Don’t put off things that bring you joy

 

[KimT]

Just try to remember a NCS/EMG looks for many things. It also rules out many things. I'm glad to hear you're only having to wait six weeks. Some are waiting six months.

I know waiting is not easy but you can do it. Focus on things that distract you.

Until you get the EMG, try to do what Nikki suggested.

 

[Dot1234]

Thank you I will take that on board

The more I try to use the right hand/arm it’s causing extreme pain in the muscles at the top of arm or in fingers.

I feel very lucky I got a call to say I can go for my EMG on Tuesday so not much longer to wait!

 

[Nikki J]

That is excellent. Plan a super fun weekend.
ps extreme pain sounds like something other than mnd

 

[Dot1234]

Emg is done although she wouldn’t give me any results and said I’d need to see neurologist for them bit gutted about that as I may need to wait ages for an appointment!

I expected it to be lots of needles and electric shocks but it was literally only two needles in my arm (one hand area and one upper arm area) then done. Then she done my leg and just two needles. I was half expecting to be full of needles! Wasn’t very pleasant but was ok.
Are EMG usually this quick and only two needles?

Hopefully they don’t leave me waiting ages for answers

Thank you for replying x

 

[Nikki J]

If they had seen anything abnormal they would have done more. When I had mine after identifying an abnormality she tested the surrounding muscles and kept going until she found areas that were clear. part of als is having widespread abnormalities which is why they don’t test all muscles if normal and don’t stop with doing a single muscle if it shows any sign of ALS

 

[Dot1234]

Oh ok that makes sense. Thank you for your reply. She said the doctor was looking for something specific which is why they asked for the EMG think she said Issac syndrome - I’ve never heard of it before

MND/ALS is Such a truly awful disease, our neighbour sadly had it

 

[lgelb]

This is what she meant -- Isaacs Syndrome. Glad you evidently do not have it.