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niknakx

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May 14, 2017
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Learn about ALS
Country
UK
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Herts
City
London
Hello everyone my name is Nikki I'm 23 years old. It all started about a month ago when I was driving home I noticed my forearm felt tired, didn't think much of it. Left it for a few days before I looked it up on google and it came up with ALS at the very top. I started freaking out.

I went to the GP and he performed a quick neuro test and couldn't find anything wrong and told me to come back in a few weeks if it was still acting up.

I went to the chiropractor 4 times over the last month and he couldn't find what was wrong with me.

Two weeks ago the twitching began focused in my right arm and it really set me off panicking. The twitching changed which part of the arm it's in, sometimes it's my bicep, then tricep, then wrist, then hand, then shoulder but it seems to always be in my right arm and it's especially bad when I'm just relaxing.

I went to the GP a second time and she told me to have some blood tests that all came back clean. But she put me on citalopram because my anxiety was through the roof and told me to get in contact with a mental health team.

This last week I was back at the GP where he performed another neuro test which also was fine but told me he's referring me to a neurologist to have a check. I have my appointment with the neurologist next Saturday which feels like an eternity away now.

So as of right now my right arm feels like it's getting more and more tired, it gets tired after using it and feels heavier than my left arm. The strength seems to still be there though. The twitching seems to be getting worse and is mainly focused on my right arm with some twitching also in my legs. I have a spot on my right arm where if I squeeze the skin I have no sensation of feeling.

Some people keep telling me it's just my anxiety going crazy, but it seems to real to be all in my head. I've worried so much I've lost a stone in weight and have not been sleeping or eating properly. I'm just so worried.
 
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Nikki,

My advice is, stop going to a chiro who's not helping (and some could actually make things worse), get a massage from a qualified physio, maybe do a hot tub, get some sleep and go out and eat at your favorite place. And maybe visit a care facility where everyone is much worse off than you.

I'm not saying your feelings aren't real, but once you started focusing on ALS and your arm as one thing, together, of course, your anxiety took off. So let's assume ALS is off the table, and acknowledge that sometimes one arm or the other feels tired and numb, since we're all overusing our arms one way or another.

Saturday is only a week away. I doubt very much that anything serious is going on, but I'd use this week to try to feel better, full stop, and that will give you much to do that can help you, rather than go on as you are.

Best,
Laurie
 
Thanks Laurie, I'll try my best to calm down. I keep trying to take my mind off it. I stopped seeing my chiropractor and he wrote a letter the Doctors asking to be referall.
My arm is tried even though I've done nothing with it all day. I can wake up in the morning lift my arm and it feels heavy and tired.
 
If the neuro feels that a spine problem could be affecting the arm, or has another concern, he will order imaging.

So either way you should know more soon.
 
Update after trip to neurologist

I called around a few of the hospitals and managed to get an appointment with a neurologist yesterday rather than waiting until saturday. I told him all about my symptoms including my right shoulder and arm getting weaker and getting tired after very little use, the twitching in my arm and my grip getting weaker.

I told him I was very worried about ALS/MND and he laughed and said "I wouldn't put a bet on that becuase you would lose all your money." He checked my relexes and told me to close my eyes and touch my nose. He didn't perform any strengh tests or anything like that but asked me to have an MRI and EMG to see what could be going on and then return to him in three weeks time for a follow up appointment.

I mean there is a part of me that is releaved for a few hours, but I've woken up this morning and I am still nervous about my symptoms. I just don't want to be brushed off because I'm in my 20s. I still have another neurologist appointment booked in for saturday and I can't decide if I should keep the appointment and get a second opinion to calm my nerves or to just cancel it and wait until after I get the results of my tests.
 
Mod note- Please continue posting on your original thread. Please don't open another.
 
My apologies, thank you for merging the two.
 
I try to remain calm but I just keep feeling like my symptoms just keep getting worse. My right arm is defintley getting weaker as items feel heavier when holding in my right arm that the left, which is odd becuase I am right handed. When I use certain muscles in my arm and hand it starts to twitch and spasm. I noticed a few weeks ago that my right sholder was lower down than my left. I know the neuro said yesterday that it didn't indicate anything serious but I can't help being worried.

Am I worrying with no good reason? I know my age is on my side but I still can't help being terrified and everyone in my family just thinks I'm crazy.
 
Nik-

The people here are not able to help you with regards to your fear of ALS. My recommendation is to continue seeking appropriate medical care. Part of that would be to request a referral to a psychiatrist who specializes in somatic disorders. This is in NO WAY a dismissal of your concerns about your symptoms. It is just another specialist to consult with while you continue to seek medical assistance. A psychiatrist who knows how powerful the brain is and is experienced in detecting if there are any physical symptoms being caused or increased by faulty brain chemistry is hugely beneficial.

Visiting with a physiotherapist can also help provide feedback about the mechanics of your symptoms and can not only help with symptoms, but can be invaluable in tracking changes that can't be explained by injury or poor posture.

It really is important for you to understand that an ALS forum is not the place for you right now. While I understand how frustrating it is to have symptoms that doctors don't think signify anything to worry about, the people here can't really help you further. Continue to work with your gp and be open to other things than ALS as the cause.

Best wishes

~F
 
Update: So I went and had my EMG test yesterday. I went in and told the neurologist all about my symptoms and that I've made myself sick with worry with fears of ALS/MND.

He did some strength tests on my arms and hands which were all fine, checked my reflexes and they were all fine as well.

He then proceeded with the EMG and tested both my nerves and my muscles. He stuck the needle into three different muscles on my arm. When he took the last needle out he turned to me and said "you do not have MND" and I said "do you promise" and he nodded saying "I am 99.99% sure it's not, there was absolutely no nerve damage, the only thing that showed up was some possible tenseness in your neck." I then asked about the twitching in my hand and he said "I specifically looked at that and I saw nothing that we would be looking for."

So I'm slightly more relieved now, hopefully I can get these worries out of my head. I have some CBT coming up to help with my anxiety which should help and a follow up with my neurologist in a few weeks after my MRI. Thanks everyone for your help I appreciate it more than you know.
 
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