Gigi86
New member
- Joined
- Jun 28, 2016
- Messages
- 3
- Reason
- Learn about ALS
- Country
- It
- State
- Italy
- City
- Milan
Dear all,
I've been quietly reading a lot around the forum but I finally need to write my story.
It all started with feeling generally ill for a while, let's say may and June of this year. I was just not feeling right, dizziness, nausea, stomach problems.
Everybody including docs said it was anxiety and wrote it off as that. I had better and worse days. I went to a psychiatrist that gave me citalopram (celexa) an SSRI. I took a small dose for only three days and felt INCREDIBLY sick.
I quit the meds because after all I like to feel awake and clear headed and myself. I know it's a controversial subject with antidepressants but that was my choice.
Anyways after citalopram I started having muscle weakness all over, but especially in my left leg and in my hands. I was also having tingling sensations all over my legs and back. This all faded away gradually, except for the weakness, that did seem like "percieved" because I could still do everything, strength tests too (visited neuro muscular doctor 10 days ago - I think more specialised in ms than als - and he said I was fine, but I was starting to feel fasciculations, really tiny, on my legs and shoulders that I could feel inside but not see or touch. He said that was fine.
Six days ago during the night I was woken up by a cramp in my left calf and it quickly stopped when I massaged it but started fasciculating strong and visibly in three spots and hasn't stopped since. The fasciculations have quickly spread into my thighs front and back, arms, shoulders, other calf, lower belly. So far hands and feet pretty unaffected.
I was on my way to convince myself that I have bfs when three days ago I noticed a dent in my right calf, on the side. I'm pretty good at anatomy and I really think this is not normal, and I'm 100% sure it wasn't there before because I've been checking my legs like crazy.
What's worse is that it's on the leg that felt less weak between the two!
And it still does. I don't understand.
Sleeping is really hard with all the twitching but I also have this really frustrating feeling in my "weak" spots as if the muscle was a bit ticklish that doesn't go away at rest. So when I move I'm heavy and weak, and at rest I'm twitchy and my muscles feel like rubber bands wiggling and tickling. I get no peace.
The weakest feeling is in my thighs and shoulders, but it feels like my core muscles (lower belly) are also getting really soft and shaky. I do shake a lot with minimal effort.
So here it is. I gave my main symptoms.
Both my hands feel kind of stiff too, and both forearms seems to get tired quickly.
At this point I know all I can do is get an emg but I'll have to fight because doc thinks all I have is anxiety (hasn't seen hole in calf yet though).
I'm terrified to wake up tomorrow or the next day with another dent in my arm or leg, or with foot drop or my fingers not working.
My source of hope is only the fact that I didn't think als weakness came on so quickly? I mean literally I had a huge decrease in strength and fasciculations increase in six days? Can it be? Does it mean I have fast progression?
Also I didn't know als attacked all limbs at once? I am having issues with both arms and legs although the left side seems weaker.
As I hold up my smartphone my lower arm feels tense and weird. I keep thinking, tomorrow I will wake up and that muscle will be gone.
One last thing. I'm not afraid of this deadly disease in itself ( I mean of course I am) but I'm running out of ideas of what this might be.
What pains me the most is that I have a partner that I love with all my heart he is the love of my life and I've already put him through hell these last months of feeling ill.
I hate the idea of hurting him. Of making him suffer. How can I do this to someone I love.
If it turns out I have a degenerative disease I can never accept to let him see me like that, to scar his life with such an experience?
After all we are both young.
I can't stand it.
In my mind I'm sure something is seriously wrong. The calf dent was the last drop. Can it really be?
Thank you so much for your time everyone, I've been so inspired by the kindness and hopefulness that I found through these pages.
Do I have als?
If I do, how can I do this to the love of my life?
Gigi
I've been quietly reading a lot around the forum but I finally need to write my story.
It all started with feeling generally ill for a while, let's say may and June of this year. I was just not feeling right, dizziness, nausea, stomach problems.
Everybody including docs said it was anxiety and wrote it off as that. I had better and worse days. I went to a psychiatrist that gave me citalopram (celexa) an SSRI. I took a small dose for only three days and felt INCREDIBLY sick.
I quit the meds because after all I like to feel awake and clear headed and myself. I know it's a controversial subject with antidepressants but that was my choice.
Anyways after citalopram I started having muscle weakness all over, but especially in my left leg and in my hands. I was also having tingling sensations all over my legs and back. This all faded away gradually, except for the weakness, that did seem like "percieved" because I could still do everything, strength tests too (visited neuro muscular doctor 10 days ago - I think more specialised in ms than als - and he said I was fine, but I was starting to feel fasciculations, really tiny, on my legs and shoulders that I could feel inside but not see or touch. He said that was fine.
Six days ago during the night I was woken up by a cramp in my left calf and it quickly stopped when I massaged it but started fasciculating strong and visibly in three spots and hasn't stopped since. The fasciculations have quickly spread into my thighs front and back, arms, shoulders, other calf, lower belly. So far hands and feet pretty unaffected.
I was on my way to convince myself that I have bfs when three days ago I noticed a dent in my right calf, on the side. I'm pretty good at anatomy and I really think this is not normal, and I'm 100% sure it wasn't there before because I've been checking my legs like crazy.
What's worse is that it's on the leg that felt less weak between the two!
And it still does. I don't understand.
Sleeping is really hard with all the twitching but I also have this really frustrating feeling in my "weak" spots as if the muscle was a bit ticklish that doesn't go away at rest. So when I move I'm heavy and weak, and at rest I'm twitchy and my muscles feel like rubber bands wiggling and tickling. I get no peace.
The weakest feeling is in my thighs and shoulders, but it feels like my core muscles (lower belly) are also getting really soft and shaky. I do shake a lot with minimal effort.
So here it is. I gave my main symptoms.
Both my hands feel kind of stiff too, and both forearms seems to get tired quickly.
At this point I know all I can do is get an emg but I'll have to fight because doc thinks all I have is anxiety (hasn't seen hole in calf yet though).
I'm terrified to wake up tomorrow or the next day with another dent in my arm or leg, or with foot drop or my fingers not working.
My source of hope is only the fact that I didn't think als weakness came on so quickly? I mean literally I had a huge decrease in strength and fasciculations increase in six days? Can it be? Does it mean I have fast progression?
Also I didn't know als attacked all limbs at once? I am having issues with both arms and legs although the left side seems weaker.
As I hold up my smartphone my lower arm feels tense and weird. I keep thinking, tomorrow I will wake up and that muscle will be gone.
One last thing. I'm not afraid of this deadly disease in itself ( I mean of course I am) but I'm running out of ideas of what this might be.
What pains me the most is that I have a partner that I love with all my heart he is the love of my life and I've already put him through hell these last months of feeling ill.
I hate the idea of hurting him. Of making him suffer. How can I do this to someone I love.
If it turns out I have a degenerative disease I can never accept to let him see me like that, to scar his life with such an experience?
After all we are both young.
I can't stand it.
In my mind I'm sure something is seriously wrong. The calf dent was the last drop. Can it really be?
Thank you so much for your time everyone, I've been so inspired by the kindness and hopefulness that I found through these pages.
Do I have als?
If I do, how can I do this to the love of my life?
Gigi