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.

 

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  • Posted

    Hi,

    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☆

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  • Posted

    Thankyou for your replies Dorothy and Justme, I've been trying to stay away from the internet for a few days as I just know I will always end up on google typing in my symptoms and almost certainly be panicked by the results. I still haven't heard from the clinic that are supposed to be making me a neuro appointment, a few more days and i will contact them. I have now convinced myself that what i am experiencing is actually bulbar onset ALS. Christ, I've just realized how ridiculous I sound, but that's just how I am, I'm a worrier and frankly I'm at a point where i just need answers. I'm not jumping to conclusions based on the first thing that pops up in google search results by the way, like a typical hypochondriac might. I've suspected ALS since my symptoms started as I stated in my first post. Slurred speech (yep), Nasal voice (yep), Hoarseness (yep), Tongue fasiciculations (indeed), also an aching jaw, excess saliva and slight breathing problems. The only symptom I don't have yet is difficuly swallowing, which usually only comes along later anyway. I cannot convey to you just how much I am am completely and utterly convinced that I have this disease...perhaps as sure that you are of the sky being blue, or that grass is green, thats how sure I am. Again, I'm so sorry for my lengthy ramblings, I just need an outlet for all my emotions, because It's gnawing away at me not knowing.
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    • Posted

      hi,

      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...cry

      hope you get appt asap

      let us know how you get on 

       

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    • Posted

      Hey boy. I have very ,almost exact symptoms as you for the last 2 years.The doctors are telling me it is stress and anxiety. I personally think it is autoimmune related. I have been told it is a nerve issue. I have spinal stenosis.

      Do you have problems with your spine?

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    • Posted

      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.

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  • Posted

    You will hear very soon. Though be prepared that they might need more tests before giving you a definitive answer.  We are thinking of you  in this horrible limbo - you are not alone. Thank you for replying and do, please keep in touch. Hugs. Xx
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  • Posted

    Sorry to hear you are so worried but that's because of the uncertainty.make sure you chase that neuro appointment. I would urge you to insist  a Scan of your head as the symptoms do seem to be as a result of some neurological problem but you need to know so you can begin to fully deal with it. Good luck.. You must be firm with the medical profession. Your health is ultimately your ownresponsibility
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  • Posted

    Sorry to hear you are so worried but that's because of the uncertainty.make sure you chase that neuro appointment. I would urge you to insist  on a Scan of your head as the symptoms do seem to be as a result of some neurological problem but you need to know so you can begin to fully deal with it. Good luck.. You must be firm with the medical profession. Your health is ultimately your ownresponsibility
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  • Posted

    Sorry to hear how you are feeling, I hope by now you have seen a neurologist and tests have started, have you ever heard of myasthenia gravis, Some symptoms can be similar to ALS but not life threatening.  Please try and stop worrying cause it's making things worse for you, but I know it's easier said than done, cause I have been through something similar though I don't like to go into details about it in public. Take care.
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  • Posted

    Hello again, sorry It's taken so long to reply and thankyou for your comments. Well, I saw a neurologist on 29/01, and while I knew that I wouldn't be getting any answers there and then, part of me was hoping that pethaps he would give me a little re-assurance. I got none.

    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.

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    • Posted

      This is a serious problem for you.  It would be for anyone.

      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!

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  • Posted

    Sorry to hear about your symptoms, if its any comfort i will tell you what ive been through for the past 3 months, it started off as weakness in my arms which eventually spread to other parts of my body, then came the twitching which has been going on for 2 months already, certain parts of my body like my left shoulder and knee, as well as my right foot get more fasculations than the rest of my body, i also get muscle aches and pains and have noticed some muscle atrophy when i compare my arms and legs, my tongue feels weird and gets twitches all the time, i have trouble swalling at times as well, have trouble sleeping or staying asleep, feel really tired and restless all through the day, cant exercise as much as i could and it keeps getting worse, noticed slurring of certain words, muscle and joints feel weak and shaky etc... etc.... i think you get the point since your going through a similar phase, now that being said, i on the other hand have been to plenty of doctors, including atleast 3 different neuro's one of which around a month ago ordered an MRI which was clear and the golden test tool for ALS which is an EMG, they conducted that along with a Nerve conduction study and surpirsing both came back clear, apart from that ive had my blood work done as well such as ANA profile to rule other other diseases such as Lyme disease etc.. unfortuntely since i had my EMG the symptoms have remained the same or have gotten worse in some cases, due to which i am still online worrying about what if i have an MND, but from every single doctor ive met or talked to, they are convinced i dont have ALS/MND and blame it on other factors such as lack of certain vitamins or too much protein, someone also sugged that i might have fibromyalgia ( I would look it up because alot of the symptoms you described are also present in that ) lastly the one thing every doctor has told me is that if the EMG is clear then you dont have ALS, i have asked them questions like what if it was too early to catch or it wasn't detected on the parts of the body that they checked etc ... etc... etc... but the answers i got were the same " If indeed you have ALS/MND, it would show up on an EMG way before you even started to feel the symptoms, that being said i wouldn't freak out too much and im certain you don't have ALS, because if someone like me who was pretty much sure had it and still think's they do even though the test's and doctors don't then its more of a Psychological issue or some other medical issue rather than some disease we think we have. Hang in there and hope for the best 
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    • Posted

      Hi. I'm interested in hearing if you've found out more about your symptoms. I've been going through something similar for the past 5 months. Waiting for the EMG in 2 weeks. The neuros (4 different so far) I've been to say, based on their neurological examination, that I don't have ALS... still not convinced... I'm also worrying a bit about early Parkinsons...
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    • Posted

      Hi Frank, 

      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

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    • Posted

      So who told you that if a EMG is normal then u don't have it? Because my neurologist had done a EMG on my legs and he said that there was no since in doing the arms because ALS works in 4 limbs and he said that I didn't have ALS and prescribed me anxiety medicine, but he said that the EMG test will show something before u experience symptoms
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    • Posted

      Ozcar ate you still having problem ?/Did they diagnosis you with anything after your MRI and EMG came back clear. I have the same problems you have stated you have had.
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