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
muning NowhereBoy
Posted
My symptoms started about a year ago. I noticed I would stumble now and then. Around Aug I started to feel weak and lack of stamina. In October I noticed my right calf was just hanging. Then my feet felt weak. Then came the twitching. Went to four Neurologists had to EMG's. None can give me a diagnoses. Last one I saw was at ALS clinic. He said I Don't have ALS. Asked him what do I have he could not give me a diagnoses and said to see a psychiatrist. I also are now having bulbar symtoms . I'm so weak and short of breath. I am absolutely terrified and don't know what to do.