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daviesimmin

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Learn about ALS
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West midlands
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Birmingham
Hi people, I was wondering if I could get some advice as I am in a bit of a state since the neurologist I saw lately thinks this could be MND/ ALS, but from my reading around the internet and even reading your stickies it really doesn't add up fully, and I've been left in a bit of ... a mess I guess.

I am 25 years old and 3 months ago exactly I noticed twitching in my legs, which has spread all over my body (including my tongue which twitched a few weeks back for a minute or two). My legs (calf and thighs twitch non stop all the time, and sometimes wake me up). I saw a neurologist a month into it and he said it was benign fasciculation syndrome and said no need for EMG?! I then saw another neuro on Friday because I was still worried, who said he thinks this could be the start of MND :(!

I was still anxious but took his word, but then about a month ago I started getting a really sore tongue and felt as if I was struggling to speak, all my friends said I sounded absolutely normal and still do say I sound fine. my tongue feels to big for my mouth and I occasionally catch it with my teeth but this sensation does come and go along with the aches in it. Can anyone clarify if this sounds like bulbar onset? as neuro seemed a bit concerned by it but did say he saw no atrophy, and I could do all the movements he asked.
I also have a horrible sensation at the back of my throat as if I need to clear my throat, which he mentioned may turn into difficulty swallowing, and since I have coughed a few times drinking fluids.

As I mentioned I twitch constantly in my legs, literally 100's a minute sometimes and randomly around my body, some which may last a day or so then disappear. I passed all the strength tests with first neuro and the second neuro. I am also a weight lifter and have noticed no difference in my strength, which I thought after 3 months I should be? even just a bit.
Both neuros said I have brisk reflexed in my knees, which really worried the second one, but the first said anxiety and cause my muscles are strong they kick more?! or something.

I have been reading the internet for answers and although my symptoms match a bit to MND they don't fully and I asked some people who saw neuros at top clinics who said it barely ever starts with twitching and young strong people, they always see weakness or performance issues first because of how the disease works.

Can anyone advise me what to do or even give me their thoughts if they think or have heard of als starting like this? I am depressed about this and not sleeping and feel lost. the second neuro has booked me in for a EMG but I am on waiting list.
 
Anxiety can cause brisk reflexes as neuro number 1 said.

We generally do not second guess physicians who have examined you in person but either there is something you have not mentioned or you have hit upon an incompetent neuro.

You apparently had a normal clinical exam, you have no weakness - not even perceived weakness! Your symptoms are twitching and some speech issues that are not noticed by others neither of which indicate ALS.

I can tell you Dr Martin Turner of Oxford, an ALS specialist world renowned, has stated that he would not do an EMG without clinical weakness and if he did one and it was abnormal he still would not diagnose MND without weakness

Did this doctor spontaneously say he thought it might be MND? Or is it possible you brought it up and he said something like well I suppose it COULD be? Sometimes during stressful appointments our minds twist things a bit or we don't remember everything we were told
 
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Hi Nikki,

thank you so much for your response. No I didn't miss anything out, I don't feel weak anywhere I don't think. I have found various grooves and ... dents? over my body but none have progressed and have no weakness with them and my GP looked at them as said it wasn't atrophy, just dents I hadn't noticed before.

I did say I was scared it was MND but he did say "I think this could be the start we will book you in for an EMG" I went blank at this point and can't really remember exactly what he said but he seemed stuck on the MND. He was quite cold to be honest and seemed fairly disinterested. He was worried about my speech saying that it can be worrying that I find it an effort to speak, but he didn't notice any slurring. I am really concerned about my tongue, I do find it an effort to speak sometimes, and I do think I slur but my girlfriend who I ask constantly says I sound exactly the same, I am also worried that I have coughed a few times while drinking like he said I would.

My speech problem comes and goes though, sometimes I don't notice it and others time I am super aware. I wondered if it could come and go like that cause other muscle is doing the work of the tongue or something at that time, then gets tired and that's why my tongue aches so badly at times and feels heavy? what do you think?
 
My husband was bulbar onset and he didn't have any of the things you feel.

You didn't believe the first neurologist so went to another and you brought up MND. Is this neuro a neuromuscular specialist?

Most of what you are pointing to as symptoms are not really, so try to ease back and let the medical professionals do their job without trying to steer them in any direction and then panicking when they respond with something vague.

All the best.
 
Hi Tillie

thanks for your response I really appreciate it, and I am really honestly sorry for your loss.

I did trust the first neuro, he specialised in MS I think so I am not sure if that is a "neuromuscular specialist", I know MS affects your movement so maybe he is? The second neuro I have no idea but it said on his bio that he dealt a lot with migraines and headaches.

Does bulbar come and go, and is it pretty obvious? I read/ been told others usually notice first and there is nothing you can do, your tongue and throat just don't work?!?
I hate this all.
 
Also would it affect my limbs at the same time? I read on here somewhere that its one or the other because the disease targets a brain area or something and the mouth part and arm and legs part are far away maybe?
 
Ok. You really need to see a neuromuscular specialist if you are truly worried.

Your mouth issues....do you grind your teeth or have tmj? Both lead to pain and some difficulty moving your tongue.

Fasciculations....I get them all the time...all over. Usually when I am hopped up on caffeine, stressed, or very tired they go into overdrive.

You are young and lift weights. Your age goes against the diagnosis and since you can still grasp weights and lift regularly , I dont think als is what you have. With als, the nerves and therefore the muscles fail and you simply cant do things mo matter how hard you try.

Swallowing,....do you have thyroid issues? Some of the things you mention can be caused by thyroid imbalance, electrolyte imbalance, dehydration, etc.

I would trust your doctors.
 
We have a great sticky post that really explains things well and is our official position.

Bulbar is obvious - everyone would be asking you if you are secretly drinking or have had a stroke.

ALS does not come and go - your nerves are dying, you fail to be able to do things.
 
so you all really don't think twitching is anything to be worried about, even though its non stop?

With my mouth issues, no body has said anything and those who know I am worried say I sound normal.

I have started doing some of the tests the neuro did on me and ended up hurting my hand, I am now worried about that because Idont know if it would normally have got hurt.

sorry for all the questions and stuff, I dont have anywhere else or really anyone else to talk to about this
 
Goodness do not try to test yourself, it isn't possible. Last time I was in hospital I let the medical students practise on me. It's a hard thing to learn so you can't do it yourself.

You sound very anxious, the problem is when you are anxious it causes a whole host of symptoms in itself and that can make diagnosis a problem. It's best that you go back to your GP and explain the constant worry you have. You really need to get that under control while you wait for your EMG.
Good Luck

Wendy x
 
Hi Wendy,

it is very difficult to remain worry free when your life has been turned upside down by this possibility, but thank you. I am sorry to see you have been diagnosed :(. Were any of your initial symptoms like mine?
 
I agree with Wendy. Go back to the doctor and express your concerns. Anxiety can bring on a lot of physical ails.

My father had bulbar and it's very noticeable. He sounded like he had marbles in his mouth when speaking. It doesn't come and go. At 25, the 'possibility' that you have ALS is Very, Very, Very small.

I have a headache today and am not immediately thinking I have brain cancer. Anxiety will turn a simple thought into a whole host of unimaginable possibility.

The best advice would be to stop Googling and testing yourself and get another medical opinion/further testing if they feel it's necessary.
 
Hi
No none at all. My first symptom was that I had developed a limp, I had not noticed, other people had. At the point I had my Emg five months later I still had no twitching. So very different from your symptoms.

There are lots of different things that can cause what you are experiencing and it's very hard to deal with it when you are worried. That's why it's best to work with your GP and the neurologist. Get your GP to look at helping you to cope with the worry while you are waiting for answers.

As Tillie has said the sticky answers so many questions and should reassure you.

Wishing you the best
Wendy
 
guys thank you for answering and trying to reassure me, especially when you have lost someone or are battling this disease yourselves, it is really kind and I mean that.

I've read the stickies and I wouldnt of posted if it wasn't for a neuro telling me he thinks it is the start of MND, but as with those stickies and your comments I dont know because it seems conflicting. I have read elsewhere on here and other sites saying it doesnt start with twitching because the twitching comes when the muscle has already lost connection to the brain cause the nerves that make movement are gone.

I am trying to get a GP appointment but takes a while. I may go private and see another neurologist.

Today my speaking has been fine just a shaky feeling all over my face and mouth. not sure of twitches cant see any. is that something that ever happens? and as normal my legs are like popping everywhere.
 
Hi I seen that I meant a new post which got closed - sorry about that.

I could still REALLY do with some advice and thoughts please cause I am loosing my mind. This is what I posted. any info from people here who know the disease well will be much appreciated.

I posted a few weeks ago because I had seen a neuro who said that they were worried I could have MND, which got me really upset. I have seen another neuro yesterday who said he does not think MND but benign twitching disorder and he isn't sure what the previous neuro was on about it.

Can I just get some of your thoughts please, because a lot of you know ALS well and I would really appreciate your advice. I am not taking it to rule over a neuro I just want to hear.

I am 25 and twitch all over, constantly. calf muscles never stop and neither does my thighs. this is been going on for 3 months now. I haven't noticed weakness yet, and all my reflexes are fine, expect legs are a bit quick but neuro yesterday said that's cause I am anxious. I also lift weights and haven't seen any lowering in my strength and he said I would of by now. I am also now experiencing cramps. They are not to bad but they have woke me up, again not sure if I am just overthinking. are MND cramps really bad? would I know about them?

I have no other illness or that except hayfever which is unrelated.

From what you people know of MND/ALS do you think I should just stop worrying?

I apologise for posting again. I have just been so scared since that second neuro said he thought MND.
 
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