wasaB
New member
- Joined
- Nov 21, 2018
- Messages
- 5
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- PL
- State
- PL
- City
- Cracow
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.
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.