Possible ALS/MND? Extremely Worried..

Brain and nerves
1

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.

 

2

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☆

3

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.

4

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

5

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 

 

6

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

7

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

8

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.

9

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.

10

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 

11

Hi, I've just read you're symptoms and thought how similar they are to how my sister was before being diagnosed with relapse and remitted ms, this diagnosis was only after an mri scan was done (only done after repeated trips to the gp over a year) by this stage she could not walk straight, had the numb feeling in her body so much so she could not feel the temperature of the bath, the burning sensation in parts of her arm, could not pick up a cup of tea or even coordinate it to her mouth, shared speech, basically many very similar symptoms as yourself, ms is not easily diagnosed as there are a lot of conditions with similar symptoms but I would defiantly push for an mri scan, the good news for my sister is her treatment works wonders for her, she not had a relapse for 5 years now, after she recovered from her relapse she was left with a few problems ( the burning sensation in her arm and a little weakness in one leg and arm) but nothing noticeable, I hope you get the answers you are looking for and wish you well smile

12

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!

13

Do you consume any products with Aspartame or other artificial sweetners? It sure sounds like Aspartame overload. I stopped eating/drinking anything with it and feel better. I had a lot of the same symptoms as you. Good Luck

14

My wife has myasthenia gravis and the symptoms you are experiencing sound just like hers. Hard to get a diagnosis so be persistent.

15

Hey did you by any chance get a diagnoses i know this must be hard, im in the same boat as you, hope you got the diagnoses you were looking for, keep us updated!

16

Hi,

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.

17

Please look into Lyme Disease.

18

Hi.

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.

19

Ps. I just want to add some extra symptoms and see if you share any of them.

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.

20

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...