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sgx.saint

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Learn about ALS
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Hello All.

Before I start ranting on about my situation and symptoms, I just wanted to say to everyone here that is suffering from MND that you have my upmost respect, and I am in complete awr of your bravery and I think you demonstrate all that is good about being human. In times of ones own suffering, you are here to help others.

Anyway, I come here, looking for answers, and like many perhaps I am jumping the gun by immediately thinking I have ALS/MND. However, I think we're all guilty of worrying about it whether the end DX was ALS or something different.

General Symptoms

Tremor – Hands, Arms, Legs, Neck/Head

Suffered with tremor, specifically in my hands, since around the age of 14. Past couple of years, albeit still very mild, tremor now apparent in my neck/head and legs, diagnosed with essential tremor.

Myoclonus/Muscle Jerks/Involuntary Movements

Suffered for the past year with involuntary muscle movements, where a part of my body will move of its own accord, very quickly, usually lasting less than a second, then returning to normal. The body part will normally only move very slightly, i.e. no more than a few millimetres.
85% of the time the ‘jerks’ are predominantly in the legs. The remaining jerks are usually limited to the arms and hands, with a very rare occasional neck jerk.
These involuntary movements or jerks happen only when at rest, i.e. sitting, standing still, laying down.

Muscle Fasciculations

The past month I have suffered from many muscle fasciculations, which appear all over my body, but are usually more apparent in my legs and arms. Although I have also had them on my upper back, thigh and abdomen. As far as I can tell these fasciculations subside when I move the effected body part, however this is not 100% certain.

Muscle Pains

The past month I have also suffered from random muscle pains, which can affect any part of my body. They are again primarily affecting my legs but as mentioned, I can get them anywhere. They can only be described as ‘growing pains’ and are often either a dull radiating ache, or a more sharp pain. The latter type being the more predominant pain.

Muscle Stiffness

I have also had a little muscle stiffness, predominantly in the legs, however some stiffness also in the arms. This again is very very mild, and could possibly be a phantom symptom.

Neck/Throat Ache/Pain

The past two days, my neck has randomly been aching, the type of ache you get when you have been talking for far too long. I can speak and swallow fine at this stage and there are no other problems in this area. Although this pain has now gone, and not re-occured.

Muscle Weakness/Weird Sensation

Within the past 48 hours, my arm/hand has felt weak, but it’s a weird sensation, it feels weak even when I am not using it. Like a tingly weak, and its not always present. Yesterday it felt fine all day until the night time when it all of a sudden felt tingly weak. Also, I don’t think my muscles are actually weak, they just feel weak. It’s a really weird feeling. Sometimes I almost think I am imagining it, then other times I realise its actually there.


Well, thats my current symptoms, just wondering if anyone can relate to them, obviously I am hoping you can't lol, which may give me some comfort at this stage.

One other thing, my friend who is a Healthcare Practioner, conducted the Plantar Reflex and Hoffmans Sign test. Both were negative, and I reacted normally on both.

I am awaiting an appointment with my GP and hopefully a referal back to a neurologist.
 

patricia1

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Joined
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lopatcong NJ
Hi It doesnt sound like ALS but keep your appt with your GP. They are very vague symptoms Like benign tremors Good luck Pat
 

sgx.saint

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Dec 23, 2007
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Learn about ALS
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Hi Patricia1.

I really appreciate your reply.

It's a bit awkward at the moment as I am moving doctors, so I am hoping to go into my town centre tomorrow and register with a new doctors, and make an appointment for asap.

My arm is still feeling weak and tingly, which is currently my most worrying symptom, but in the scheme of things none of the above symptoms are currently effecting my day to day living. I am able to do everything that I can normally do.

I tell you one thing, regardless if this turns out to be ALS/MND or something else, I have had my eyes opened to how precious life really is, and I intend to do everything in my power to try and further research into curing this disease.

I'd also appreciate some more opinions on my symptoms etc.
 

CathyAmanda

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Nov 26, 2007
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Friend was DX
Country
AUS
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South Australia
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Adelaide
Hi Sgx.saint

I am curious..........You say you havn't seen your GP yet what makes you even think of MND/ALS......I only ask because untill my family friends were diagnosed with this disease (Garry first who died on Valentines day and now Julee newly diagnosed) I had never even heard of this disease and yet on this website there is always someone who thinks they have it without even having the words uttered to them.

In our family we tend to worry is it cancer if we have headaches too long etc but that is a very common disease......All the symptoms you describe I have had at some point but I would never think ALS.

I am not trying at all to be rude, it really is curiosity as to how so many who havn't seen a doc yet think of MND/ALS.

Hope you dont have this disease as it is the cruelest of them all.
 

sgx.saint

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Joined
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Reason
Learn about ALS
Country
UK
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City
Teesside
Hi Sgx.saint

I am curious..........You say you havn't seen your GP yet what makes you even think of MND/ALS......I only ask because untill my family friends were diagnosed with this disease (Garry first who died on Valentines day and now Julee newly diagnosed) I had never even heard of this disease and yet on this website there is always someone who thinks they have it without even having the words uttered to them.

In our family we tend to worry is it cancer if we have headaches too long etc but that is a very common disease......All the symptoms you describe I have had at some point but I would never think ALS.

I am not trying at all to be rude, it really is curiosity as to how so many who havn't seen a doc yet think of MND/ALS.

Hope you dont have this disease as it is the cruelest of them all.

Hi CathyAmanda,

Wonders of the internet I'm afraid.

I simply entered some of my symptoms and low and behold one of the many results was ALS. But in saying that, there was many other possibilities, but personally, I tend to worry, and assume I have the worst.

Hence how I was led here.....
 

sgx.saint

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Dec 23, 2007
Messages
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Reason
Learn about ALS
Country
UK
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Teesside
City
Teesside
Actually, I do have one question.

Is there a usual timeframe from the onset of symptoms with ALS that the Hoffman's response is first noticed. i.e. if ALS is present, will someone immediately show a positive hoffmans sign?
 

CathyAmanda

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Joined
Nov 26, 2007
Messages
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Reason
Friend was DX
Country
AUS
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South Australia
City
Adelaide
I am not sure on that whilst I was there in the end of Garry's life he was only around for a year from diagnosed to the end......It is only since his sisters diagnosed a month ago that I have paid this much attention to all the different stages.... It hink I took forgranted thet Garry would have a lot longer with us......Plus he kept making advances on me and as I am married with three children I couldnt really put myself in that position too often ( we had a Teenage Romance back in the day) Having said that I do know that Julee said that they checked her Responses and hers were all positive for an ALS conclusion. I do not pretend to know if this is the case for everyone. Really I wouldnt put yourself through this angst......as you said there are many other things that it could be........Please wait till you speak with your GP this is not something you want to spend possible urequired time and thoughts worrying about. If Dr thinks it could be then you will have plenty of time to worry then.
 
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