oleanka
New member
- Joined
- May 29, 2019
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- PL
- State
- NY
- City
- Warsaw
Hi. I'm a 25yo female from Poland. I'm currently waiting for another EMG to confirm (or not?) ALS.
However, while waiting I feel terrible anxiety. I'm really, really worried it's ALS. EMG results were inconclusive in some way and I have all the symptoms!
So it all started 1,5 years ago. I noticed my temperature was higher than normal. Then I noticed some twiching in my eye and jaw. I also had a feeling of water drops on the skin while there weren't any. I went to a neuro and she said "even if it is something, it's too early to say what it is - go home and let's wait and see".
After that I got a terrible pain in my lower back. I went to a physiotherapist but it didn't help at all. I got pregnant! Pain spotaneusly resolved and so the twiching and raised temperature. A few days before I gave birth, pain and weird sensations started again. I wasn't able to walk for 3 weeks following my birth! Then again... pain went away but this time not entirely. I still have troubles moving in certain way. I'm almost 2 months postpartum.
Not a long ago I've started having severe intercostal muscles cramping. Twiches all over my body, water drops too, electrical current like feeling. I have spasms(?) in my legs (all legs) and hands (arms,fingers,wrists etc.) - involuntary, jerking/clonus like movements. I have troubles falling asleep because of them! Weakness in my legs and hands - it started a couple of days ago. I also noticed, that could be independent of all this, that my legs and hands go numb at night. When I wake up my palms/fingers are usually stiff or first they are numb and after a few movements they are just stiff. Sometimes my legs are numb too but rarely stiff.
3 days ago I got a back pain that's in the middle of my back. I wanna mention that 4 weeks ago I had an x-ray of my back and there's nothing major there - no slipped dics,etc. Now I have pain in the middle of my back and in my lower back as well (the pain that started 1,5 year ago).
But what really sent me to the doctor was something else. Following my birth I started having problems with swallowing and speaking (slurring, lisping some of the words) and my voice changed a bit. I looked into my mouth - my tongue is swollen on the right. On the left, some dents? My tongue looks totally different to what it looked a couple of months ago. I went to an ENT doctor. Turns out my vocal cords aren't shutting properly (vocal cords paralysis?). They don't know why. My tongue looks asymetrical but they don't know why either. I started having more saliva in my mouth. I went to my neuro friend - got head MRI, neurological exam. MRI clear, hyperreflexia in my left biceps. I trip to the left sometimes, sometimes just general overbalance and feeling as if I were on a board of a ship.
I decided to get EMG (and ENG). ENG fine, however.... my EMG was bad. I have some fasciculations in the dorsal muscle of the hand (I think that's the name in English, it's between forefinger nad thumb), abnormal (high) polyphasic potentials in the tongue and tibial muscle (?) and also lowered PJR parameters in the left biceps accompanied by some weakness and overreactive reflexes. So 4 muscles tested. Now, it doesn't show ALS clearly but there's something going on. My neuro friend told me to get another EMG in 2 months. But that's a lot of time! I'll have gone mad by then!!!!I have a little baby and I'm only 25....why is this happening to me????
I've read all about ALS and I know it can start just like that. But whatever it is.... why is it progressing that fast in me? I know autoimmune diseases could act like this... being pregnant my immune system was weaker so it couldn't fight itself. Now I'm 2 months postpartum and my immune system is going nuts...
I don't even know why I'm writing this all.. maybe I don't wanna go crazy while waiting for the second EMG? I think, maybe I should get it sooner since each day I feel worse and worse. How often did you get your EMG to check progression of the disease?
My husband says I need a psychiatrist and it's not ALS. He says it's my brain doing it to the body. But... Could my body fake paralyzed vocal cords and EMG results? Don't think so...
I'll get some professional psychiatric / psychological help this or that way (in case I don't have the disease - I'm just a crazy person, in case I do - I'll be a crazy person because of this trauma of having such a disease).
My symptoms summary (from head to toe):
1. lots of saliva and my ears plugging from time to time
2.hoarse voice
3. trouble swallowing, i sometimes cough out bits of foods I ate and which were stuck in my throat....i also choke on the food and water from time to time
4. slurring/lisping some of the words
5. can't sing higher notes
6. fits of laugh (last just 2 seconds or so, comes on like a seizure) and cry (i cry a lot, very emotional)
7. trouble taking a deep breath
8. tight left jaw muscle
9.swollen tongue on the right and generally looking weird
10. intercostal muslces cramping (the rib muscles)
11. back pain (thoracic back, lower back) that used to come and go, sometimes severe, now persistent
12. fasciculations all over my body, feelings of current under my skin, crawling, water drops, touch, vibrations
13. jerking movement (?) of hands and legs
14. numb and stiff palms and fingers after sleep (or when i'm in one position for too long?), sometimes legs/feet too (thought it was arthritis but my results came clear for that)
15. general fatigue
Summary of the clinical findings related to symptoms:
1. hyperreflexia in left biceps + tiping/ swaying slightly with my eyes closed
2. EMG - fasciculations between thumb and forefinger / lots of polyphasic potentials in tongue and tibial muscle/ lowered pjr parameters in the left biceps
3. vocal cords not shutting properly
No mineral deficiencies, no Lyme disease.
I'm really terrified of ALS. I want to live!!! I have a little baby to care for... I haven't traveled much,and I wanted to start my own business! This all... it's crazy. I'm not ready to die!
What to do? Where to go for help? Are there more tests I should get? I'm so scared and miserable now. I should be enjoying my baby as much as I can if I'm really about to die but it's so hard. When I think that I'm going to leave my baby and never see her grow up and so on.. my heart breaks and I start crying. I feel like a terrible parent....
However, while waiting I feel terrible anxiety. I'm really, really worried it's ALS. EMG results were inconclusive in some way and I have all the symptoms!
So it all started 1,5 years ago. I noticed my temperature was higher than normal. Then I noticed some twiching in my eye and jaw. I also had a feeling of water drops on the skin while there weren't any. I went to a neuro and she said "even if it is something, it's too early to say what it is - go home and let's wait and see".
After that I got a terrible pain in my lower back. I went to a physiotherapist but it didn't help at all. I got pregnant! Pain spotaneusly resolved and so the twiching and raised temperature. A few days before I gave birth, pain and weird sensations started again. I wasn't able to walk for 3 weeks following my birth! Then again... pain went away but this time not entirely. I still have troubles moving in certain way. I'm almost 2 months postpartum.
Not a long ago I've started having severe intercostal muscles cramping. Twiches all over my body, water drops too, electrical current like feeling. I have spasms(?) in my legs (all legs) and hands (arms,fingers,wrists etc.) - involuntary, jerking/clonus like movements. I have troubles falling asleep because of them! Weakness in my legs and hands - it started a couple of days ago. I also noticed, that could be independent of all this, that my legs and hands go numb at night. When I wake up my palms/fingers are usually stiff or first they are numb and after a few movements they are just stiff. Sometimes my legs are numb too but rarely stiff.
3 days ago I got a back pain that's in the middle of my back. I wanna mention that 4 weeks ago I had an x-ray of my back and there's nothing major there - no slipped dics,etc. Now I have pain in the middle of my back and in my lower back as well (the pain that started 1,5 year ago).
But what really sent me to the doctor was something else. Following my birth I started having problems with swallowing and speaking (slurring, lisping some of the words) and my voice changed a bit. I looked into my mouth - my tongue is swollen on the right. On the left, some dents? My tongue looks totally different to what it looked a couple of months ago. I went to an ENT doctor. Turns out my vocal cords aren't shutting properly (vocal cords paralysis?). They don't know why. My tongue looks asymetrical but they don't know why either. I started having more saliva in my mouth. I went to my neuro friend - got head MRI, neurological exam. MRI clear, hyperreflexia in my left biceps. I trip to the left sometimes, sometimes just general overbalance and feeling as if I were on a board of a ship.
I decided to get EMG (and ENG). ENG fine, however.... my EMG was bad. I have some fasciculations in the dorsal muscle of the hand (I think that's the name in English, it's between forefinger nad thumb), abnormal (high) polyphasic potentials in the tongue and tibial muscle (?) and also lowered PJR parameters in the left biceps accompanied by some weakness and overreactive reflexes. So 4 muscles tested. Now, it doesn't show ALS clearly but there's something going on. My neuro friend told me to get another EMG in 2 months. But that's a lot of time! I'll have gone mad by then!!!!I have a little baby and I'm only 25....why is this happening to me????
I've read all about ALS and I know it can start just like that. But whatever it is.... why is it progressing that fast in me? I know autoimmune diseases could act like this... being pregnant my immune system was weaker so it couldn't fight itself. Now I'm 2 months postpartum and my immune system is going nuts...
I don't even know why I'm writing this all.. maybe I don't wanna go crazy while waiting for the second EMG? I think, maybe I should get it sooner since each day I feel worse and worse. How often did you get your EMG to check progression of the disease?
My husband says I need a psychiatrist and it's not ALS. He says it's my brain doing it to the body. But... Could my body fake paralyzed vocal cords and EMG results? Don't think so...
I'll get some professional psychiatric / psychological help this or that way (in case I don't have the disease - I'm just a crazy person, in case I do - I'll be a crazy person because of this trauma of having such a disease).
My symptoms summary (from head to toe):
1. lots of saliva and my ears plugging from time to time
2.hoarse voice
3. trouble swallowing, i sometimes cough out bits of foods I ate and which were stuck in my throat....i also choke on the food and water from time to time
4. slurring/lisping some of the words
5. can't sing higher notes
6. fits of laugh (last just 2 seconds or so, comes on like a seizure) and cry (i cry a lot, very emotional)
7. trouble taking a deep breath
8. tight left jaw muscle
9.swollen tongue on the right and generally looking weird
10. intercostal muslces cramping (the rib muscles)
11. back pain (thoracic back, lower back) that used to come and go, sometimes severe, now persistent
12. fasciculations all over my body, feelings of current under my skin, crawling, water drops, touch, vibrations
13. jerking movement (?) of hands and legs
14. numb and stiff palms and fingers after sleep (or when i'm in one position for too long?), sometimes legs/feet too (thought it was arthritis but my results came clear for that)
15. general fatigue
Summary of the clinical findings related to symptoms:
1. hyperreflexia in left biceps + tiping/ swaying slightly with my eyes closed
2. EMG - fasciculations between thumb and forefinger / lots of polyphasic potentials in tongue and tibial muscle/ lowered pjr parameters in the left biceps
3. vocal cords not shutting properly
No mineral deficiencies, no Lyme disease.
I'm really terrified of ALS. I want to live!!! I have a little baby to care for... I haven't traveled much,and I wanted to start my own business! This all... it's crazy. I'm not ready to die!
What to do? Where to go for help? Are there more tests I should get? I'm so scared and miserable now. I should be enjoying my baby as much as I can if I'm really about to die but it's so hard. When I think that I'm going to leave my baby and never see her grow up and so on.. my heart breaks and I start crying. I feel like a terrible parent....
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