Possible ALS/MND? Extremely Worried..
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Hi, I'm a 27 year old male and have been experiencing what I am convinced are symptoms caused by ALS. I am not so naive to expect a diagnosis but I am so worked up, just some replies from people with any experience wether professional or patient would be appreciated.
I apologise in advance for the following lengthy, perhaps rambling account of my life at the minute, I just want to get some stuff out.
Ok, so I'll start with my symptoms- of which there are many. Please know that prior to the 'sudden' onset of the following symptoms, I've been suffering with things like back pain and chronic fatigue for about a year, but these next ones started I think about two months ago.
Arm and leg weakness- cant lift heavy objects, arms feel heavy and weak all the time, Im a naturally strong person (albeit naturally slim) but lately I feel as though my strength has been drained from me. Climbing stairs is a real task, It does'nt hurt, just the heaviness/rubbery weakness. Also ankle and knee weakness and shaking.
Fasciculations (twitching)- particularly in left leg, but also present in other limbs and tongue. (these only started a few days ago actually but are getting more frequent).
Muscle atrophy- particularly visible in biceps and calfs, rapid, so much so that I now have stretch marks on my arms where there was muscle a few months ago. No pain as such although i get a deep burning sensation in my shoulders and upper arms when doing something such as scraping wallpaper, or just holding my phone to my ear causes the burning after seconds, making me keep switching arms.
Speech problems- this is hard to describe without someone being present to physically hear but I cant seem to articulate properly, certain words come out slurred or mumbled, also my lips and tongue feel strange.
Balance/co-ordination- both standing still and walking. When standing I often stumble backwards, when walking I feel unsteady ,weak, like my legs are'nt fully part of me, wobbly, etc.
Nasal/ear/throat- Ive had what i thought were stuffy sinuses for months, particularly in the morning or late at night, but lately Im so nasal, and I've started to need to clear my throat a lot and my voice is weak and hoarse. Not sore, just hoarse.
Breathing- Slight rasp/wheeze when inhaling. Shortness of breath particularly when lying down, like i cant fill my lungs.
Shaking- Pretty much everywhere...when I lower my head from looking up position it kind of judders back down, arms feel very shaky although not always visible. Legs shake visibly with certain movements/positions.
Fatigue- This is chronic. My sleep pattern is usually up and down anyway but when I do manage a good 7-8 hours uninterrupted, I wake up feeling worse than before I fell asleep, a lot worse. Also started to get hypnogogic state (sleep paralysis) a lot lately, which isn't pleasant. Also, with the fatigue, I must mention that even just walking to the kitchen from the living room is excruciating. And as I mentioned before, going upstairs Is hard, I need to hold onto the rail to support myself.
Emotional changes- Anger/sadness mainly, the odd moment of euphoria/elation, briefly. Wether this is caused by the anxiety of all this I don't know.
One more thing that I'll mention is the burning sensation on/under my skin, mainly on the top and palms of hands, wrists and topside of forearm (can't think of the correct term), neck and sometimes chest and top and soles of feet. It's just a wierd hot, flushed, burning feeling.
Anyway, I'll leave it there although there are more but I feel like an idiot and I know I've written an overwhelming amount already. One small sidenote: yes, I suffer from anxiety, always have, always will. But I've had it long enough to know that the physical symptoms I am experiencing aren't related to that. Oh, also, I'm currently awaiting a neurology appointment as all blood tests came back normal, apart from a slight vitamin D deficiency, which frankly, has only led to an increase in my fear (that they were normal, so obviously its caused by something else).
I hope someone will reply as I've never felt as scared and alone as I do now.
Mike.
3 likes, 110 replies
laura61183 NowhereBoy
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yuwanna NowhereBoy
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jeaukool NowhereBoy
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steve85620 NowhereBoy
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leif14903 NowhereBoy
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First off, I am so sorry for what you're going through. It's remarkable how similar we are, in both our symptoms and our personality. As I was reading your original post, I thought to myself "this sounds like I wrote it."
I turn 26 in 10 days and I'm also male. My symptoms began at the end of August 2014. It is now January 2015. Up until Christmas time the only symptom I had, which I somewhat ignored at the time, was that my right arm felt strange. It wasn't painful, and it wasn't necessarily pins and needles or numb. The best way I could describe it is as feeling similar to a body part that's in the middle of "waking up" after it's fallen asleep. Like, when the blood is flowing back into a sleeping body part.
Then, just after Christmas, the arm became very painful and so I went to the Urgent Care. I thought maybe a bloodclot, as the feeling felt like a circulation issue perhaps. They told me it was probably a pinched nerve and told me to take Advil. What a joke.
Well, I did what they said and it seemed to help a little bit, just ever so slightly. About a week later, my left arm and neck started to hurt, but the strange sensation wasn't there this time, just pain. Like I had been lifting weights even though I hadn't.
I went to my family doctor who also said it's likely a pinched nerve. They sent me for a CT scan of my neck which came back okay. No vertabrae issues or disc issues.
They advised physical therapy. That was 2 weeks ago. Just in the last 2 weeks my symptoms seem to have multiplied and skyrocketed. I have nerve and muscle twitching (fasculations) all over my body all the time, and my hands feel stiff. Making a fist is difficult and opening it back up is more difficult. It's a slow process.
I get sharp stabbing pains near the base of my throat and in my shoulder, and throat often feels tight or as though there's a lump in it. I feel shaky and weak and fatigued constantly. This is especially noticeable in my hands, which feel like they're tremmoring all the time but only visibly tremor sometimes.
My left leg (only in the past 5 days) has now begun to feel that "strange" sensation my arm originally felt before the other symptoms arrived. I've also noticed extreme fatigue in my shin on the same leg. I do not have debilitating foot drop yet, but it feels like it's headed that direction as it's very tiring to lift my foot and walk properly. Dragging would be much easier.
I have other symptoms as well, but these are the ones that have arisen in just the past 3 weeks. Is that possible? To have onset of things like foot drop and fasculations that rapidly?
I was at the physical therapists this morning for the first time. She was very good and performed a number of basic tests on me to determine strength and reflexes. My strength was all okay, but I felt extremely fatigued after the tests, and she noted that my durability wasn't there. She also said I had very poor reflexes.
After all of her tests she said that physical therapy was highly unlikely to help, as she doesn't believe it's any kind of pinched nerve. She also said, very seriously, that I need to go back to the Dr. ASAP and request an MRI and nerve testing.
I go back to the Doctor later today and we'll see how things go.
I'm sorry I blurted out everything that's wrong with me, but I hope it makes you feel somewhat better knowing you're not alone. I know your post comforted me, and for that, thank you.
I, too, suffer from anxiety but I also know, like you said, that this is different and I know something is wrong and it's not justd in my head.
I see your original post is from 7 months ago and that you haven't posted an update in quite some time. With that said, wherever you are, I hope you are well and I hope things are turning around for you.
I'll keep checking back to see if you reply, but either way, thank you for your post.
Frank79 leif14903
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I've been having similar problems the past 3 months. Have you found out something?
I was stressed and didn't sleep well for several months before symptoms started. They started with the tongue tightness (not limber enough) issue, and then I felt dizzy for several weeks.
I've started with thinking it was MS, but after a clear MRI I got conviced it's ALS. The neuros I've seen say I don't have it, but I'm waiting for an EMG, esp. some bulbar related regions because it all started with my tongue not feeling so limber just like with NowhereBoy. I don't slur noticibly. I can pronounce things well if I slow down, but everything feels tight and less limber, esp. when I stress.
The strange arm weakness, as if there's no strenght in it and it feels like it comes from my sholder along the arm to my hand, esp. my right, and it's wores when I wake up at nigth. I also experience cramp-like feelings sometimes in my palms and soles, and sometimes it feels like my pinky and ring finger wanna curl up (the don't, but it feels like it), mostly in the right but it has spread slightly to the left and also to my right leg, foot and toes. Very strange.
I keep on thinking ALS or maybe early Parkinsons...
Something I noticed is that if I go to a sauna, my arms feel better. And when I stress they feel worse.
Pleas let me know what you find out.
Frank79 leif14903
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I also feel like my upper forearms and my right shin get tired easily and they feel sore often. I've lost a lot of weight (and sleep) because of worrying and not eating, and training that much anymore. I do have anxiety, but if it's all due to anxiety then these symptoms are new to me. I also developed twitching which I understand is BFS, so I don't worry that much about those symptoms.
Lately I'm thinking it's getting more difficult to swallow things and sometimes breathing... but I don't know if it's due to anxiety or something more serious.
ben_08883 Frank79
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angie29533 ben_08883
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Frank79 ben_08883
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So right now, for me, it's: assume it's BFS, try to live with the strange feelings, don't stress excessively, and just wait and see. It either gets worse, or it doesn't, or it goes away slowly.
ben_08883 Frank79
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Frank79 ben_08883
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They do mention exercise intollerance with BFS, so it fits. Especially since I feel better after resting and not stressing.
No one has mentioned that I mispronounce any letters. I do stumble on letters and words sometimes, but mostly because I'm tired or when my mouth and tongue gets tired/doesn't move quickly enough. I do sometimes fixate on how it feels like to pronounce the letter 's', but it might be something I'm making up.
Right now it's just 'wait and see', and hope for the best. I think that since it all started because of stress and prolongued sleep deficiency (and training), maybe if I don't stress too much and work a bit on my sleep, while providing adequate nutrition, things will slowly move back in place.
ashleigh9387 angie29533
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ashleigh9387 Frank79
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Frank79 ashleigh9387
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If you don't eat (like I did), your metabolism will crash more and more and you'll feel worse. Add in something that's easily digestible, like fruit, (stress slows digestion) to warm you up.
All this doesn't sound like ALS. Stress can cause a lot of extra symptoms. And ALS weakness is actual weakness where you cannot do something. It doesn't feel like anything (or so I've heard).
Were you stressed prior to the onset of your symptoms? Sleeping badly? Diet change recently?
ashleigh9387 Frank79
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I am getting there. I was diagnosed with Chiari Malformation type 1 around 6 years ago and haven't had any major symptoms apart from headache and nausea. But after further research i have found all the symptoms im experiencing is what they call a flare up period of that.
I think the twitching is stress as it only really comes when i think about it or not distracted. And my muscle tightness would no doubt be related to that also. I don't feel weak, weaker sure but not like that. I have full movement basically back in my arm now. The heat in my shoulders is from cervical kyphosis which i just got diagnosed with this morning- another condition relation to chiari.
I am still going to follow up with my neuro but i know for it all to happen so quickly in 3 days without any pre-existing anything is rare- and the majority of my pain is in my shoulders which is the kyphosis. I am quite muscular for a girl and haven't noticed any change.
I know it is extremely unlikely but i just felt trapped in an amxiety hell. Yeah i was going through a period only sleeping for 5 hours a night etc and my eating has been hit and miss.
Still not having any speech issues. Sore jaw but i think that's from clenching for such long periods of time.
Im just hoping im ok 😊
ashleigh9387 Frank79
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ashleigh9387 Frank79
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Frank79 ashleigh9387
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I had some twitching in many different places. Especially when not eating enough.
Most of my stiffness/pain was in my lower arms and hands/fingers, but also lower legs. Every time I fasted and was anxious about my symptoms, the stress cased muscle twitching. And every time I felt angry or scared, the pain would come immediately.
It gets better when it's warm.
Then, 3 months ago they did an EKG and found some abnormalities and raised creatine kinase in the blood. They thought I might have some blood clot in the heart and gave me some aspirin. Anyway, I went into fasting mode again, cut out the dairy, and 3 weeks later I had more twitching again.
I tend to go from one extreme diet to another, hoping something will cure it. Then suddenly I couldn't exercise anymore because my blood pressure would rise very fast, and I started being extremely thirsty all the time, and started having kidney pain. I somehow managed to get a bunch of veins in my arm and foot to swell up, and now I cannot get them to go back again.
I've stopped the aspirin.
Someone suggested that I might have over alkalized and have Milk Alkali Syndrome. It fits the picture. So I'm trying to see what I can do about that.
But, the twitching and muscle pain par is always better when I eat more. Lately I've been doing that and am feeling better.
The possible Milk Alkali Syndrome is more difficult to manage.
I'll try to tell my doc next time, see if she believes it.
Frank79 ashleigh9387
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I've read that in ALS, mostly, wekness comes first and almost always in one place. And the wekness is acual weakness, like in you just cannot do something. Twitching happens later. And it's a continuous thing that doesn't come and go with stress levels.
Stress causes twitching probably because the muscle doesn't get enough energy (stress burns the glucose) and gets overexcited (maybe too much calcium stays inside and constantly triggers it?).
So, unless you've had clinical weakness for a while (probably without any acompanying pain) where you just cannot do something no matter how hard you try, and it started in one single muscle, and then the constant twitching came after a while, you probably do not have ALS.
ashleigh9387 Frank79
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Frank79 ashleigh9387
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It does not sound like ALS. The weakness usually comes first, and long before the twitching starts. The twitching doesn't jump around. It affects the weakened muslce because the nerve is dying.
You are twitching from stress, not eating enough/normally, and maybe not drinking enough. All these will depleate the muscles of glycogen and will mess with the electrolytes causing too much calcium in some places and too little in other places. You're also loosing sodium faster during stress. Trust me, stressing and not eating/eating the wrong thing/not drinking, can all lead to serious imballances. This disturbs your sleep. Adrenaline and cortisol are not good in the long run. I've been there and still am. But now I've accepted that I've done this to myself.
What makes you certain it's ALS?
ashleigh9387 Frank79
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It would b rare but i think I'm one of those rare cases. Will be in with the neuro soon enough.
Frank79 ashleigh9387
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I remember I was checking my reflexes all the time and weather I could walk on my toes and heels. How are your reflexes? Do you have difficulty picking up things, walking on your heels or lifting your leg?
ashleigh9387 Frank79
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ashleigh9387 Frank79
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But still could b very early
ashleigh9387 Frank79
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Frank79 ashleigh9387
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Given what you've said, I'd say there's no reason for worrying about ALS, even if the feelings of weakness return. When you cannot lift something at all then I might worry about ALS (even then, there are many other issues that could be the cause... MS, but then it takes a while for the symptoms to go away - it doesn't just come and go from one day to the next, and again, it would be actual weakness, or blindness, or...)
There are so many things that can give those symptoms. Stress exhausts the body of nutrients and energy, so whatever issues one has, it gets worse with stress. Hypothyroidism (many kinds) can also lead to such issues.
So the best would be to just somehow drop speculating about ALS. I know I wish I had done that earlier than I did.
angel10949 Frank79
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rebecca86649 ashleigh9387
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I was just reading through your posts and I was wondering how things had gone for you as I am experiencing many of the symptoms you spoke about. Hope you are feeling better just wondering if you ever got a diagnosis? Take care