Possible ALS/MND? Extremely Worried..
Posted , 72 users are following.
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
justme67 NowhereBoy
Posted
Im sorry to hear how your feeling and truly hope you get sorted soon.
Sorry I cant offer any help, but everyone on here is lovely and im sure
You will get a lot of support .
Hope you get a diagnosis asap☆
NowhereBoy
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justme67 NowhereBoy
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did you get in touch with the clinic?
give them a little push for an appt..
yes try keep off google, you can end up frightening yourself on there with some of the things its says...
hope you get appt asap
let us know how you get on
cameron72844 NowhereBoy
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i_itch_76074 NowhereBoy
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Do you have problems with your spine?
sean73 i_itch_76074
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I have no spinal problems that I know of. I believe it may be autoimmune related in my case too but the doctors have not been able to tell me what's going on. I've been told it will have to get worse before they may be able to figure out what's going on.
dorothy90221 NowhereBoy
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Jsw57 NowhereBoy
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Jsw57 NowhereBoy
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lorna60206 NowhereBoy
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NowhereBoy
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I was expecting this appointment to last the best part of an hour but no, I just got 15 minutes and my questions were met with silence, apart from when I enquired about how my babinski's reflex was, he seemed surprised that I even knew what it was. The answer to that by the way was: 'It didn't go up or down, which is neither bad, nor good'.
What concerned me more though was when he tapped my jaw and couldn't find any reflex at all, particularly as over the last couple of weeks I've noticed that my jaw feels kind of 'heavy' and drooping and my speech problems are getting worse, particularly trying to pronounce words that contain the letter 'R'...It's like my tongue simply cannot roll out that sound. Hoarseness is getting worse too.
I did mention my fears of having ALS at the end of this brief appointment and was told 'We will test for that. Now I don't like the sound of that, it's as if he already suspected it before I mentioned it, like he'd seen enough In my examination to note this as a possible cause.
In summary, I am now absolutely, positively convinced that I have bulbar onset ALS. I just cannot find any other diseases that include all of my specific symptoms (I know myasthenia gravis has been mentioned but I just cant identify all my symptoms with it, I really don't think it's that.) Also, I've read other peoples ALS stories and a lot of them started out exactly the same as mine. I now cannot think of anything other than how the hell I'm going to deal with being told that I have this disease and how it inevitably progresses.
I'm being sent for an MRI and an EMG, he expects both results to be back before Xmas. Oh, and as if in a cruel twist of fate, on the morning of the 30th I was woken up to the news that my partner is expecting our child.
I'm an absolute wreck guys.
jennifer96649 NowhereBoy
Posted
Your low Vit. D could be indicative of an autoimmune problem. If so, try to find a competent Immunologist, only. Most other doctors generally will roll down to the same answer. If they would just answer "IDK" up front they could save everyone a lot of trouble.
I have Sjogrens, and several others of that genre, as well as some kind of MND. The best use of my time (once any pain issues are resolved), is to spend time breathing slowly, in and out, go out every day, thank God for the unbelievably fabulous gift of life and for each day in it, see your friends and loved ones, carefully eliminate toxic people from your life who confuse kindness with weakness, and spend some serious quality time with yourself.
There is nothing the doctors who see you will be able to tell you for a long, long, long time. Going to see them will only aggravate you, so don't.
Worst case, you have an idea of what you may have. That gives you an incentive to think more about the qualitative aspects of your life.
i check the message boards to pick up good daily quality of life suggestions from people who have similar problems. This is the first time I have replied, I hope it helps. I personally went to the M. Clinic, in November of 2010 they told me nothing was wrong with me. This year so far I have spent 23 days in the hospital with pneumonia. I am doing everything I know to try to stay out of the hospital, and I avoid doctors, period. I do not need to pay someone to systematically marginalize my problems using testing procedures that in many cases correct only about half the time. If they are that arrogant, they will never be able to help you. Trust in the God who made you and consider this part of your life, as you do every other part of your life, to be in his hands and HAVE SOME FUN!
ozcar NowhereBoy
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Frank79 ozcar
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ozcar Frank79
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Well my symptoms are still pretty much the same on and off, having more trouble with weakness and pain lately especially in my arms, shoulders and hands, the right side seems to be worse, get speech issues sometimes and feel like my throat and jaw are getting weak because while im eating it gets tired more easily, i did have another EMG at the start of the year which came back normal as well since then the only thing my doctors discovered i had was Psoriatic Arthritis which they found in my MRI but i doubt that has much to do with my other symptoms, ive come to the point in my life where i have givin up on finding whether or not i have ALS or a MND etc... ive seen various doctors who don't seem to think i do, in fact i met one of the leading specialist in my country who has seen various cases of ALS and treat people with it including celebrities and he said i don't have it and i had to let go, the only diagnoses he gave me was BFS, Fibromyalgia and not leading a healthier lifestyle, he suggested i go see a Rehibilation doctor and get physical theraphy as well as consider seeing a shrink and maybe try taking some Anti depressants. At present i am on anti inflamation medication which i take when the pain gets worse and Cymbalta which is suppose to help alot but i haven't seen any changes yet. All i can say is if i have ALS or any similar disease i guess thats whats meant to be and running to the doctor will not help me cure or treat it, better to live my life having fun and trying to focus on other things, if its ALS it will eventually show and it will not be one of those things the doctors are not sure of at that point, if not i will continue to live my life to the fullest and live as long as i possibly can.. Good luck to you and hope you can find the answers you need as well
cameron72844 ozcar
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Angela0987 ozcar
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angel10949 ozcar
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