sefarion
New member
- Joined
- Jun 29, 2020
- Messages
- 9
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- CZ
- State
- CZ
- City
- Prague
Hello!
First of all, I want to thank you! You are doing an amazing thing despite your health status
Secondly, I am not a native speaker, so apologize in advance about my grammar
Thirdly, Of course, I have already read „sticky note “but I would like to discuss it with someone.
About me:
Hello again, sorry for bothering you but I would like to hear your opinion, about my problems, based on your experience. I am living in the Czech Republic and even if our healthcare is really good we have one big issue, doctors don’t talk with us much even if we ask.
I am 29 male, I hope that I am not usual “anxiety twitcher”. I have analyst calm mind, already beat cancer (at least for now) four years ago, so I am not freaking about "small things"… currently already working with my GP and neurologist.
Problems:
In February I had really bad flu/COVID whatever it was. From that time, I am always tired (used to sleep for 6-8 hours now I need at least 10+). And had non-specific pain in all my limbs. I have tried to usual way to rid of it (more sleep, light exercise, healthy diet, pills -> nothing helped). Can’t focus on stuff how I used to.
In time more problems occurred, in March burning sensation in my limbs, also sometimes my limbs are… hmm.. like “part of them doesn’t belong to me at all”.
In April twitching in calves occurs and through May and June spreads into the whole body. I have also more pain. In calves and elbows twitching is 24/7 sometimes more sometimes less. On the left side, it's like 100% more than on the right. Also, this “24/7 twitching” I don’t really feel it, but I can see it. It’s like snakes moving under my skin” Sometimes I have “normal” twitching when I can see and definitely feel it (but it has a short duration and its much less common).
I don’t know how to describe more of my pain…. It can be cramps, but not that kind when “someone wakes up and can't stand up and it hurts terribly for the moment,my pain is "less painful and more durable”.
At first, I thought it’s just “after sickness stuff”. I also thought it was because of stress (living alone, my family is far away, my dad had a big health issue I couldn’t help, also problems at work, I was finishing my master degree, break with GF) I ate a lot of magnesium and B complex and tried to no bother much about it. When my “self-care” didn’t improve my state I give up and visited doc.
I have visited my GP, he runs a few blood tests, and everything was okay. So, I was sent to a neurologist.
I was checked with these results: (I don't have results in my hands, I just typing and translating what I remember or what is written in messages for my GP)
Quadhyperflexia, indistinct sym. weakness.
MRI spine cord and brain was clear, (only minor changes)
Emg without a needle: “oversensitive” muscles
Emg with the needle: neurogenic changes in some muscles in both legs and right hand
Somatosensory evoked potential: Abnormal in my legs left side is worse.
Currently, I am waiting on results of MRI spine only and next week I should have a lumbar puncture
I don’t have foot drop, can use all my limbs, can jump, my dexterity is… a little bit worse, but it's manageable. I didn’t have any fall, but I have to more focus on my walking or on my balance (which is weird I never ever have to think about how I should use my limbs at all, now I have to). I mostly just feel weak (I used to be fanatic swimmer, so I was “strong”) lost most of my muscles.
What do you think about my problems? Based on the results, something wrong is definitely going on with me... But nobody is talking with me... I didn’t even want to bother you, but when I received my EMG results and my neurologist just tell me that she needs to run more tests, it makes me for the first time little bit insecure. And of course when I tried myself to get some information on the internet many pages with information leads... here...
Thanks for reading!
Tomas
First of all, I want to thank you! You are doing an amazing thing despite your health status
Secondly, I am not a native speaker, so apologize in advance about my grammar
Thirdly, Of course, I have already read „sticky note “but I would like to discuss it with someone.
About me:
Hello again, sorry for bothering you but I would like to hear your opinion, about my problems, based on your experience. I am living in the Czech Republic and even if our healthcare is really good we have one big issue, doctors don’t talk with us much even if we ask.
I am 29 male, I hope that I am not usual “anxiety twitcher”. I have analyst calm mind, already beat cancer (at least for now) four years ago, so I am not freaking about "small things"… currently already working with my GP and neurologist.
Problems:
In February I had really bad flu/COVID whatever it was. From that time, I am always tired (used to sleep for 6-8 hours now I need at least 10+). And had non-specific pain in all my limbs. I have tried to usual way to rid of it (more sleep, light exercise, healthy diet, pills -> nothing helped). Can’t focus on stuff how I used to.
In time more problems occurred, in March burning sensation in my limbs, also sometimes my limbs are… hmm.. like “part of them doesn’t belong to me at all”.
In April twitching in calves occurs and through May and June spreads into the whole body. I have also more pain. In calves and elbows twitching is 24/7 sometimes more sometimes less. On the left side, it's like 100% more than on the right. Also, this “24/7 twitching” I don’t really feel it, but I can see it. It’s like snakes moving under my skin” Sometimes I have “normal” twitching when I can see and definitely feel it (but it has a short duration and its much less common).
I don’t know how to describe more of my pain…. It can be cramps, but not that kind when “someone wakes up and can't stand up and it hurts terribly for the moment,my pain is "less painful and more durable”.
At first, I thought it’s just “after sickness stuff”. I also thought it was because of stress (living alone, my family is far away, my dad had a big health issue I couldn’t help, also problems at work, I was finishing my master degree, break with GF) I ate a lot of magnesium and B complex and tried to no bother much about it. When my “self-care” didn’t improve my state I give up and visited doc.
I have visited my GP, he runs a few blood tests, and everything was okay. So, I was sent to a neurologist.
I was checked with these results: (I don't have results in my hands, I just typing and translating what I remember or what is written in messages for my GP)
Quadhyperflexia, indistinct sym. weakness.
MRI spine cord and brain was clear, (only minor changes)
Emg without a needle: “oversensitive” muscles
Emg with the needle: neurogenic changes in some muscles in both legs and right hand
Somatosensory evoked potential: Abnormal in my legs left side is worse.
Currently, I am waiting on results of MRI spine only and next week I should have a lumbar puncture
I don’t have foot drop, can use all my limbs, can jump, my dexterity is… a little bit worse, but it's manageable. I didn’t have any fall, but I have to more focus on my walking or on my balance (which is weird I never ever have to think about how I should use my limbs at all, now I have to). I mostly just feel weak (I used to be fanatic swimmer, so I was “strong”) lost most of my muscles.
What do you think about my problems? Based on the results, something wrong is definitely going on with me... But nobody is talking with me... I didn’t even want to bother you, but when I received my EMG results and my neurologist just tell me that she needs to run more tests, it makes me for the first time little bit insecure. And of course when I tried myself to get some information on the internet many pages with information leads... here...
Thanks for reading!
Tomas