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Nrcam83

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Joined
Aug 28, 2016
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Reason
Learn about ALS
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00/0000
Country
UK
City
Aberdeen
Good evening all, my name is Neil and I am 33 years old. I am getting married in 8 days but sadly I am going through a tough time with my health.

About 3 weeks ago, I began to notice that I was getting discomfort in my joints (elbows & knees). i then noticed that I was finding it more difficult to control the fine movements of my hand eg. Using a pen, typing on a keyboard, taking coins from pocket etc. About this time I began to get heavy fasciculations in my calfs. I put my symptoms to doctor Google and was pointed to MS and ALS. As an inherent worrier, I latched on to this and boomed a doctor appointment. They took blood samples to check for arthritis and other diseases returning a few days later with the all clear for anything detectable. Naturally this made me worry more as I have read that these diseases are undetectable in blood. The doc gave me propanolol to control my anxiety which hasn't really worked. I struggle to walk with the fizzy fatigue feeling in my legs and the fasciculations are driving me insane. The alien feeling in my hands remains along with other niggles like tension headaches and a painful groin. I know the latter symptoms are likely down to the worry of what I may have, but I am looking for anyone to explain to me whether my fatigued legs and stiff, clumsy hands is ALS related. I am really struggling, having to take time off work due to anxiety and am driving my poor fiancé to despair with my worry.

Thanks in advance for your comments.

Neil
 
Neil,
Congratulations on your forthcoming wedding.

You do not mention if any strength test ("push against my hand") was done. That would normally be paired with the blood work to determine if any neurologic deficit or systemic concern is at hand. But you do not mention that you cannot do anything you have done (struggling to walk is often down to fatigue and stress from worry), so I am presuming you do not have clinical weakness.

We most often think of a passing virus, sleeping badly or a poor posture in working, in regard to the symptoms you mention. I would focus on stress, sleep, diet (fruit/veg/dairy), hydration, exercise and enjoying the nuptials. You might see a physio for a hand evaluation/massage if the feelings persist, and try a little magnesium lotion on the hand meanwhile.

Best,
Laurie
 
Hi laurie, thanks for the quick response. It is much appreciated.

I do not appear to have any clinical weakness. I read so many conflicting statements on 'weakness' so all I can say is that I am as able to lift weights, do push ups etc. My body feels weak but in reality I can output what I was. On a couple of occasions this week, my knee has dropped, almost given way and I am concerned that this is 'weakness'. When I explained the wobbly leg to the doctor she said that they will feel like that due to the constant fascicukations. I don't know what to believe! I am clouded over with the "what if" when i should be enjoying this period in my life.

What I forgot to mention was that The doctor did a full neuro test (reflexes, sight, sensory) and said everything was normal. I do trust the doctor, I just feel that my "early symptoms" are an exact match for the lists you read on any ALS fact sheet.

I am latching on to something told me about adrenaline in your system when anxious and this can cause the feelings that I am experiencing. I fear that I will not fully relax until I get the more in depth testing carried out but there's no chance of that in the time before the wedding.

All comments welcome.

Thank you
Neil
 
Please go to the top of this forum section and read the sticky titled READ BEFORE POSTING.

The great news is all your concerns have been addressed in that post. It's our official position. You don't have any ALS symptoms. I hope you can read the sticky post decide to believe us. How tragic if you were to ruin the wedding experience with this, you won't ever have this time back again and it is going to the foundation for a lifelong marriage. I would encourage you to stop and consider this deeply.
 
Thanks tillie, I appreciate the stance in this post, sadly anxiety is a powerful thing and with documented symptoms being so similar it's hard to rule it out.

I am making a real effort to not allow this to ruin the happiness of now but physical symptoms keep cannot be ingnored. I will take the comments on board and hope that everything returns to normal. I just wanted some clarity on what the 'weakness' felt like. Sounds straight forward I know. Apologies for being another worrier.

Thank you
Neil
 
Nrcam83, allow me to paraphrase and summarize your posts:

33-year-old male; whole body is doing weird stuff and feeling strange. Hands are unsteady and not handling things very well. Legs are feeling fatigued and heavy, as though they have a difficult time walking down aisles. The painful groin, well...

Sounds to me like someone who is going to get married soon.

Physical symptoms, yes. The brain runs your body. Anxiety can make the body do all sorts of stuff, very physically.

As Tillie said, there's no ALS there. I truly wish you well.
 
Thanks Mike. I see your train of thought and you're certainly not the first to suggest this. I'd say I'm quite calm about the wedding, my fiancé is great and a fantastic organiser! The reality is if continue to feel like I have the past couple of days, there is a great chance that I physically won't be able to walk down the aisle! I'm real unsteady on my feet. I pray that you're all right with what you say. The body and mind sure is a powerful thing.

Neil
 
Neil, you are entirely incorrect to assert that your "early symptoms" accord with what is found on "any ALS fact sheet." If that is truly the foundation of your concern, you have even more reason to be at ease; we here have greater insight than you as to the contents of whatever fact sheet you saw.

I don't think you're any more anxious about the wedding than your health, but each can feed the other, you must admit. As Tillie says, this is the beginning of your marriage and the first investment to make in it is to let go of your wild hare.
 
I just wanted some clarity on what the 'weakness' felt like.

Neil

You don't 'feel' anything.

You simply CANNOT do things.

Please, please, read the sticky title READ BEFORE POSTING. It states the difference between 'feeling' weak and clinical weakness so clearly.

You do not have clinical weakness and no one with ALS feels weak or any of the things you report feeling.

All the best, we do truly sympathise but we have limited resources here as we support people with a terminal illness.
 
Clarification on Twitching

Good afternoon everyone. Firstly is like to apologise as this is my second post in a week and you were all very helpful in easing my anxiety. Unfortunately, the symptoms remain and appear to be getting worse.

1. Twitching. My calf muscles twitch and ripple 24 hours a day sometimes moving up to my thighs, buttocks, arms and shoulders. I have read that there are many forms of ALS, is it likely that the twitches would be full body? I can feel almost every one of them. I don't trust my legs when about to get up. They feel like jelly. However, when I was out with friends last night, they appeared to feel better than they had in weeks.

2. Hand stiffness and clumsiness. This has been constant for a month now. It was noted while holding a pen at first. Today is the worst day, I feel like my hands are freezing over and stiffening up. There's no visible change apart from tremors in my fingers when I make small movements. I am petrified that this is the beginning of them becoming redundant. I occasionally get fingertip pain when knocking them.

3. I feel my speech has become slurred. Again, this gets worse when I'm worrying about it and comes back when I'm socialising. Like most of my symptoms!

All input greatly appreciated.

Many thanks
Neil
 
Re: Clarification on Twitching

A final point on my mouth, I feel like my chewing has slowed down and it's awkward to eat and drink. Especially with my Clumsy hands.

There appears to be a different shape to my mouth which a confirmed with whistling.

A couple of visits to the doctor and they are telling me it's anxiety but I feel semi relaxed apart from the worry of this. I had a good blood test and eye exam and neuro test in the doctors room. It's driving me up the wall. :(
 
Re: Clarification on Twitching

Hi
Mnd symptoms don't get better, you won't have weak legs one day and then normal legs in the evening when you go out.
Anxiety symptoms do ease when you are relaxed,distracted by pleasant things, enjoying yourself and not over thinking and worrying about yourself.
I really don't think you need to worry about ALS but do work with your doctor to help with easing your anxiety over your health, they can investigate properly and find out what is wrong. There is no substitute for hands on clinical examination from your doctor. All we can do is reassure you that it doesn't sound like our experience of this disease.
Wendy
 
Mod note: Per Forum rules, please stay in ONE OPEN THREAD.

Thnx
 
READ THE STICKY!

You didn't, because you opened a new thread, so go read it, then leave here, get some counselling and start living.

You don't have ALS.
 
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