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wasaB

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Hello Everyone,

I would like to start off with saying that I have utmost respect to all of PALS and CALS who despite the illness did not forfeit and are fighting and living each day as happy as it's possible. I have lurked the board for 2 months (read ALL stickies) now and I've decided I wanted to share this with you as I lost all hope... I know this is long and I understand that not everyone will read it, but perhaps there is something that I'm missing and someone else can notice. I had neuro exam once, got worse since then. I only ask for any kind of impression, verification from CALS or people who were diagnosed with something else.

My name is Mateusz, I'm from Poland, and I'm 30. I never had any major health problems, other than some dermatological ones, teeth stuff and since 25, 3 cases of spontaneous pneumothorax in my left lung. The third time was in July this year and I had a surgery and spent 2 weeks in hospital. I was never very athletic after turning 23 and I was always skinny. I was always stressed and anxious, but never hypochondriac (perhaps a bit after 2nd pneumothorax). Mostly I was actually anxious about well-being and safety of my family, not myself.

In early September I have gone with my fiancee and her parents for some hiking. I wasn't feeling too good, then, was a bit fatigued and had some pain under the rib, but nothing really bothersome. Next day, just mild soreness. Next two weeks were worse, fatigue, lack of focus, burping and malaise. These were my symptoms in previous pneumothoraces and I had already devised a test to see if I had it. I would stand straight, bend, and when coming up if I felt "bubbly" feeling, it would mean it's back. But one day I saw visible throbbing in my chest. I went to pulmonologist, got an Xray and it was clean. I should say I was supposed to go to South Korea in a month and me being prone to pneumothoraces, made me more anxious.

I continued to test myself. I've noticed that when I'm bending at certain speed my spine or muscles have a catch (can't tell which it is). When doing the motion slowly, there would be a point when it went like a cogwheel. Same was happening with my neck.

I also started to have twitching in one spot in my thigh, but I assumed it was too much coffee and I've cut it down to minimum. I was still "testing" and at some point, I've noticed that my legs are trembling when I was bent forward. Couple days later when getting up from bed, I've noticed the same trembling in my stomach. I've tried some exercises and I noticed that when I lift my legs up when laying down, they wobble. I didn't feel any specific weakness at that point. I've also seen that when standing if I lift my knee, it's fine, but when I put it back, it trembles. Both legs. I went to couple of GPs and the only thing out of order was my thyroid. I had subclinical hypo with Hashimoto and was started on levothyroxine. My gastrointestinal stuff got worse which GP assumed was IBS or thyroid.

Also at that point, I've started getting fasciculations which were happening in different places, my back, my biceps, my lower back, abdomen, face but mostly in legs, calves, feet and arms (bilateral). My arms seemed fine at that point. My legs were feeling so weak at times that I couldn't stand straight, I was terrified.

Beginning October, I went to the head of neurology department in my hometown as she was a friend of my family. Obviously my fasciculations were not visible when she was inspecting me, but reflexes were brisk bilaterally, but not pathological apparently, no Babinsky. She said my thyroid could attribute to weakness, she ordered further blood tests and told me to train a bit. I was aware of ALS at that point and she dismissed it. I was waking up at night with weird stomach sounds and buzzing in my upper lip.

I did what she asked, all electrolytes good, and the only thing I got from working out was even more weird stuff and wobbling I noticed in my legs. I've become depressed severely, crying heavily, had multiple break-downs etc. Went to psychiatrist and got started on meds. Fasciculations were present everywhere at that point. I slept better but it unfortunately subsided quickly. I started noticing the same wobbling in my arms (both) when supporting my trunk when I sat on the floor. I was testing myself compulsively, push ups, situps, squats.

I could do all of them but I felt fatigued quickly. At points I thought I was getting better, long walks, short runs were ok, but the legs were still trembling no matter how hard I tried. At night I would wake up and have huge pains in my neck and lower back. I also wake up at night and can't sleep. Each move that I do after waking up suddenly at night is trembly. Lifting things makes my arms fatigue and burn quickly. I have dry mouth (maybe meds for depression) and my voice is hoarse, I have non-stop tinnitus since 2 weeks (but that could be depression meds too). I don't chuckle on food, but I drink a lot when eating. Even when I'm sitting, and have my arm up to drink from a cup, it shakes. Holding a 3 litter kettle, shakes, holding a phone = shakes. Keeping phone in same position for 10 minutes, fatigues my arm. When I open my mouth and press a finger under my chin it trembles heavily.

My fasciculations are of different kinds: some small, brief, point specific "electric-current" feelings, others throbbing, pulsating, pop-pop-pop or contract and release, which makes my limb move a bit (maybe clonus). I have a painful point in my lower back. I also get paresthesias, but rarely. I always sat weirdly, but numbness in these cases comes much faster nowadays.

While I'm writing this, I fasciculate all the time in every muscles and I shake when trying to stay upright in the chair. I can still do 20 push-ups and 30 squats, and probably 30 situps if it wasn't for the back pain (my muscles shake the same whether it's 1st or 30th rep which is, I would say, my last glimmer of hope). Still, my legs shake when I press the clutch in my car, or just keep a leg down with my heel up. I don't have any foot drop it seems.

I don't see any atrophy, but I am no doctor, the only loss of mass I see is my "bum" which is more bony then before.

I really apologise for the length of this, and for bothering people who are actually diagnosed while I'm nowhere near that at this point. But I just desperately look for any kind of help, reassurance, advice to keep at least a bit of my sanity in place until I get it sorted out with docs. I know this would be an atypical onset (but maybe it was much earlier, but not being athletic, I was unable to notice) and some symptoms don't match. I never had any fasciculations in my life as far as I remember. Maybe there is still someone here who had symptoms like that and it wasn't ALS or other disabling or terminal illness.
 
While you state you do not have hypochondria, your actions (much self testing) and the language you use state otherwise. You state you self tested and experienced "cogwheel" motion- this is something ONLY a doctor can assess and is a very specific type of muscle movement and response to certain actions, not just something that catches or jerks a bit when you move.

Please also read here: https://www.alsforums.com/forum/do-...-common-concerns-about-possible-symptoms.html to read about sensations such as pulsing, buzzing, electric current, etc. The vast majority of these can be attributed to medication and definitely not connected to ALS.

You will need to go see a doctor in order to track down the actual source of your physical issues, but this does not fit the pattern of ALS- which is clearly outlined in the link above.
 
Nothing in your post suggests ALS. Fasciculations are common, nonspecific, and meaningless. You have not described muscle function failure which would be the hallmark of ALS. Shaking and trembling and feeling weak are not the same as failure.

You say you can do “20 push-ups and 30 squats, and probably 30 situps if it wasn't for the back pain”. People with ALS can not do those things.

Your post suggests significant anxiety. Keep working with your doctors and get your anxiety under control. But forget ALS because you don’t have it.
 
Karen, Shiftkicker - thank you for your replies. I admit that now I am in the state of severe hypochondria and anxiety, I just made a remark that in the past, it never really happened to me. I have decided to seek psychiatric evaluation and went on meds due to that. Sorry if this aggravated you.

Shifkicker - I read that sticky post of course. I know odds are in my favor, and the progression pace would be really out of ordinary, but I have reached a point, when I really wanted to share and get some impressions.
 
Consider yourself answered, friend. Keep up with your current work with doctors and getting help with your anxiety- you are definitely on the right track. Things can take a while to work out, no matter how much we'd like to take a pill and be instantly better. ALS has a particular constellation of symptoms and you do not share them.
 
I've noticed that the thread has been viewed multiple times, so I guess I'll keep my story going, for those who have similar symptoms or are otherwise anxious.

I've visited neuro to get the referral for hospital visit (it works a bit differently in Poland than in the US) and next week I'll probably get EMG, MRI etc.

The neuro noticed brisk reflexes in both legs (she called them borderline) and wasn't able to elicit fasciculations with the hammer. The interesting thing is, my hands are also weak and the reflexes were ok. There was no Babinsky, I showed her videos of what happened in my hand and in my leg, and she said that what happened in the leg doesn't look like typical fasciculations; the hand might a bit, but it's not clear. The visit was short and I didn't have a lot of time to describe everything in detail. She said that I need to get it sorted, but she's inclined that there might be couple of different things happening simultaneously. I asked her if this looks like ALS and she said that it doesn't look like it, she said she had ALS patients and the presentation was different. There was not time to do strength test so that's a pity.

Hopefully, this post will stay in this sub-board.
 
Thank you for the update. It's good to hear the neuro does not believe it is MND and that she is following up with further appointments to see what is going on. It sounds like your doctor was thorough and thoughtful in her approach.
Please let us know how your tests go.

Best of luck
 
Hello Everyone. I’m currently in a hospital going through panoply of tests with the last one, I guess being MRI, scheduled for tomorrow.

Most importantly, I had my EMG. And it’s clean. Not even fasciculations. I’m far from second guessing it, given it was done in all limbs and tongue. It couldn’t have been too early as I’m visibly symptomatic. That being said, it’s not ALS. Could be MS or systemic, but ALS is not on the plate anymore it seems.

I just want to thank everyone who gave me reassurance here, because you can’t even imagine how much it gave me psychologically.

If possible, I would like to keep the thread open, just to be able to post my hopefully last reply on what it actually was and to help all the anxious souls that are roaming here, desperate to find out what’s happening to them.

My last thought to everyone who thinks they have ALS - do NOT self diagnose at any point. The more you do it, the more your brain will fool you and exacerbate what you see as sinister. Believe in your docs, talk to God and appreciate every bit of your life instead of obsessing about terminal illness. You can get ill at any point of your life, it may not be ALS, you can die in a car accident tomorrow. Treasure each day of your life and make it count. You’re never getting that day back.
 
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To the mods: please close the thread after this post.
To everyone else, if you feel like your story seems similar, you can always write me a message, I will keep my account on the forum and reply to you.

tl;dr version

I DO NOT have ALS. End of story, my EMG had literally no abnormalities whatsoever, this post is a summary of of my 9-day stay in hospital's neurology department (it's Poland, so there will be stuff that you won't get if you live anywhere else, but I'll hint on that) and it'm writing that mostly to help the anxious ones. If you really want to know what I was going through, read below.

Long version:

I was admitted on Monday, Dec 10th. They took my blood and urine but that was it. I had multiple neurologists visiting me and doing tests, all noting very brisk reflexes in legs (no clonus) and muscles trembling on exertion. They couldn't elicit fasciculations on tapping (and at that point I have hundreds of those everyday, everywhere). I told them I have some recorded (those that kept for longer time in one place). Nobody cared :D. They said that I will have an EMG, ultrasound of neck and stomach, chest xray and more blood and stool tests the next day. They outright said that they're going more for testing of MS, demyelination, myopathies rather than ALS, but since I'm in such a distress (heavy psychiatric meds, eyes red from crying) they'll try to do EMG asap. But obviously, that didn't reassure me. They said not to look at anything written on the referrals, they may sound serious, it's just because they want every doctor testing me to take it seriously.

I was panicking and barely grasping reality, it's EMG right, it's an ALS "yes or no", the golden standard. Nurse came to me while I was waiting in my room, saying that I have to go for EMG right now, everything else can wait (ultrasound, xrays blah blah).

The EMG was done both by senior technician and the neurologist simultaneously, which I believe is not a case for most people writing here. And here, couple of thoughts:

- don't even TRY to interpret the sounds or rely on very well written and widely cited articles explaining EMG responses. If you're not a doctor or technician that is almost solely doing these tests for a living, you don't know sh**. I've read some posts here, where people found articles and tried to interpret EMG sounds. I also read these articles. Don't do it.
- EMG is not painful, not even uncomfortable, it's just a bit weird to have needles stuck in you and doctor moving them around. For me it was 20 minutes. Just ask your doctor to give you a referral if you are anxious and just go for the procedure.

They did all limbs, tongue (every site of fasciculations and every site of "weakness" - bear in mind the quotation marks). They also did it on my back muscles, and it was almost at the end of the procedure. I cried, tears were flowing like from a hose (i didn't sob not to show them). When I got back to laying on my back, the doctor looked at me perplexed:

"Why are you crying, is it that painful for you?"
"I am scared that I have ALS"
His eyes became wide open as if I just asked him to marry me.
"What?! Why?! Your EMG has no abnormalities, I still have to do thorough analysis, but from what I was looking at, there's nothing going on there"
"But fasciculations?"
"Nope"

It felt like I was hit with a huge, blunt weapon. I couldn't even speak. I just barely uttered: "really?"
Now, a non anxious and mentally healthy individual would jump around singing and kissing people hearing the huge news. But my mind, just went, ok, thank God it's not ALS. So now what? MS? Muscular dystrophy? How much time do I have left before I will have to ask my fiancee to help me with simple tasks. And what if it's paraneoplastic? Metastatic cancer maybe?

My blood was tested almost every day, then one day on the morning visit I heard that my blood work is looking good, but they noticed that CK and myoglobin are elevated. It's not a cause for panic they said, but we have to look around more in that case. I had a test for vision (with MS and stuff on the plate), no abnormalities. Next day, my CK and myoglobin went back to normal. I have mentioned briefly that I can't just sit around from all the nervousness so I walk around the hospital around 5-7 miles every day (I have the fit band thingie).

One day a young lady doctor came to check up on me. I was still anxious about my weakness. I asked her outright if we can do some strength tests. She smiled and nodded. She started with the bicep, like the bicep curl test, when I was supposed to bring my hand to my chest. I did it while I was sitting in bed and she almost fell on me like in a cheesy romantic comedy. She smiled, and checked my other hand (she was pretty but I'm engaged, so I refrained from using that amount of force in the other hand :D). She checked my legs, didn't even comment and went out. Topic of my weakness, was never even brought into discussion from that point.

Then they scheduled MRI. Between that time and the results, they did doppler test on my neck, tests for tetany, gastroscopy and a ton of additional blood tests. I had to wait for the results up until this Tuesday. I was obviously walking around the department from 5:20 AM, anxious. At around 8, the head of the department saw me and asked me, expressionless, to head to her room.

"We've got your MRI results. I barely see results that good in teenagers. At this point we have tested you for everything. I was anxious about your CK and myoglobin but since then you have normal results. Your leading doctor got so overboard, that you've been even tested for HIV, all cancerous markers, antibodies for numerous systemic diseases. Listen to me carefully, give yourself a break with any kind of doctors at this point. The only doctor you should have any contact with is your endocrinologist to control your Hashimoto (I now have three ultrasounds that confirm Hashimoto and obviously blood levels). I also thing you should also talk to your psychiatrist and get off the meds and if you feel down and anxious again, think about psychotherapy. Your weakness might still be related to your thyroid and all the meds you've been taking."

That's it, they have ruled out most of the terrible diseases. I do feel weak still. I obviously also have to be close to my pulmonologist but that's it. The only thing that I got out from the hospital is the flu :D.

Last points that I want to make, I know you can't help it, but please try:

* Don't google. I know you think: "I'm looking at neurology books, articles written by respected doctors and professors, not some message boards. Well, if you're not a doctor, even if you THINK that those exact things are happening, there is no way you'll be able to reliably grasp everything. If you work in IT, you won't suddenly become a specialist in neurology after dozens of sleepless night throughout couple of months, spent on reading proper neurology related materials. I can crack hospital's wifi, but I can't crack my MRI result.

* You will never be able to assess clinical weakness by yourself with a help of a colleague, partner, mom, dad, you have no idea how much force doctors use in these exercises, I've been simulating the strength tests "by the book" and I was clinically weak (in my perception of course) in all limbs. And I'm not.

* When your complain to your GP about fasciculations and s/he says that maybe psychiatrist could help, don't dismiss that. Don't think "my fasciculations are real, it's not in my mind, I have recordings, certificate from my friend and a painting of my muscle captured during the twitch...
I had couple of hundreds of fasciculations every day and after my EMG, 80% subsided and I felt maybe two today. They didn't give me any pills at the hospitals other than the ones that I was already taking. So either I'm Ellen Ripley and at some point and alien will come out, or my fasciculations were just random twitches that were exacerbated by my anxiety.

* "But all my symptoms FIT the criteria!" Do they really though? There is this paradox, at least I had it. So ALS is rare and it's also rare in people my age. Chances are slim. Then you find a case study of a guy with coeliac disease who had body-wide fasciculations. It's just one article. But you don't think this is it, since it's rare. And here comes the paradox. On one hand you are scared of a rare, terminal illness, but on the other hand, you can't let your mind admit that, there are also other RARE instances, where even if the presentation fits, it's not really that after all.
 
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