shine81
Member
- Joined
- Oct 27, 2018
- Messages
- 18
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- DE
- State
- BL
- City
- berlin
Dear all,
Sorry for the mistakes, I'm French. Sorry for the lenght (also going to blame it on the french origin ^^)
First of all, i want to express all my love to those suffering with ALS. I know how frustrating it can be for someone who has got diagnosed to see ‘healthy’ people not fully enjoying their life because they’re anxious they “could” have something. I do not want to be disrespectful and I can assure you that if I am lucky enough not to be diagnosed with this disease, I will not forget those who don’t have this luck and try to help spreading awareness and fostering research for treatment. (actually, same if I am diagnosed!)
I’m a 28 years old woman, living in Germany. Have always been kind of anxious about my health in a reasonable way, but I’ve been experimenting quite scary symptoms over the past 2 months and I have to say that I’m a not far from “loosing it” with the fear of ALS taking control over me. I can’t think of anything else, I’m convinced I have it, I cry every night, my partner is scared (of my reaction, not of the ALS itself). I need help.
So, beginning August I started with major lower and middle back pain, had two very precise and painful points that wuld not go away with the usual medication (ibuprfene, paracetamol,…). I still have time pain. I did an MRI of the back, it showed protusions at the lower level as well some deterioration in the middle level (did not do the cervical area, but 4 months ago it just showed mild arthrose). However I’ve had pain in the cervical area regularly on a chronic bases, and a lot of tension in the shoulders usually.
Beginning September, I started feeling a kind of weakness in my left arm. It feels heavy. At the same time, on the left leg, several times for day a kind of numbness (I can still feel my skin , no sensorial issue, it just feels weird ) on a very precise spot on the feet. Then, pain in the left arm, like strong cramps in the upper and lower part of the arm, sometimes it’s so strong that it feels like my skin is burning. Cramps similar in the left leg.
-My arm keeps being weak, I can’t properly take objects because the hand is so “tensed” that my fingers feel like tensed too. I don’t drop things down, but I’m having troubles doing things that I used to do normally, because my arm starts hurting (like muscle tiredness). These things are for instance hanging my clothes, emptying the dishwasher, or tipiing on my computer. I do much more mistakes, again because the left hand ‘hurts’, therefore the fingers just aren’t precise. It feels a bit like muscle soreness, hard to describe. Initially but rather rarely I also had in some fingers a burning/itchy feeling) but not anymore. Now it’s mostly this muscle soreness/fatigue sensation and heavy arm/disabled hand.
- Quickly I get a similar feeling in my left leg, my walking has changed because I am using more the right foot. I feel unstable when I walk, very careful in the stairs when I go down, and it my legs are tired very quickly when I go up.
When sitting, I get several times per day this very weird feeling of a “thrill” going down both my legs at the same time.
Since 3 weeks, I’ve started to have fasciculations. It started on the right side mostly (back, leg and in the pelvis area) and now I have time mostly when I’m laying, but everywhere. A lot of them in the stomach area. I can not “see” the muscle fasciculating, I just feel it.
I don’t have a very good transit, I’m constipated (I usually am not very well with this, but I can really feel it that it’s way way worse than usual).
Since three days, I’m having troubles swallowing. I do swallow, but there’s something blocking the way. It feels like like something on the palate in the mouth is not ok, I can’t quite explain it, it’s not in the throat itself. But the result is, that I have this trouble swallowing my own saliva , water feels also a bit painful, and aliments ok but also painful (it burns a bit further down in the oesophage and my nose has been quite full too). I’ve never had this feeling, it is very weird but it’s not like a throat infection even though my throat does hurt a bit.
I”ve seen a neuro 3 weeks ago (no constipation/swallowing issues at that time) : he did the test with the nerves (nerve conduction?), neuro tests (reflexs), and an EMG of muscles in the upper arm left, and two muscles in the right leg. All came back normal except for a tiny thing he saw in the EMG but said it could come from the cervicals (did not understand exactly what but he did not seem worried by it and said it’s not very significant.). Also had a lumbal ponction, an MRI of the skull, loads of blood tests. All came back normal.
I have to see the neuro again in 10 days, he wants to re –assess my symptoms and do the same tests again and depending on that he suggested that a stay at the hospital could be possible. I can see that he is worried and sceptical, because he can’t find any reason for my symptoms. I ‘ve asked him about ALS directly, he said “forget about it, you don’t have it”, and when I asked why, he said that I’m too young and that ALS does not progresses that rapidly. I was not very much convinced, it felt more like he was trying to reassure me and himself.
Of course, all the symptoms above make me thing that I have a very high probability to have ALS. I had managed to calm my self down a bit but now with the swallowing thing on the top, when I put all the symptoms together I’m just horrified to see how good they match. In addition, the only exam that could have reassured me (EMG) was done incompletely and not totally clean.
Questions: what do you think? I’ve read that bulbar and spinal form usually do not come together at the same time, but with exceptions. I’ve also read that fasciculations do not mean much as such, but in correlation with all my other symptoms, I wonder. Earlier today I tried lifting my arm and doing all sorts of exercises and I could do them all, so I tend to hope that my “weakness” is just muscle tiredness and not clinical weakness? (I have same strength on both sides when doctos do the test, but the left arm hurts when I do the test).
If someone read all this, please be assured that you would help a lost, very anxious and freaked out soul out here if you could answer me (frankly, of course).
thank you in advance and lots of thoughts for everyone on this forum.
shine:sad:
Sorry for the mistakes, I'm French. Sorry for the lenght (also going to blame it on the french origin ^^)
First of all, i want to express all my love to those suffering with ALS. I know how frustrating it can be for someone who has got diagnosed to see ‘healthy’ people not fully enjoying their life because they’re anxious they “could” have something. I do not want to be disrespectful and I can assure you that if I am lucky enough not to be diagnosed with this disease, I will not forget those who don’t have this luck and try to help spreading awareness and fostering research for treatment. (actually, same if I am diagnosed!)
I’m a 28 years old woman, living in Germany. Have always been kind of anxious about my health in a reasonable way, but I’ve been experimenting quite scary symptoms over the past 2 months and I have to say that I’m a not far from “loosing it” with the fear of ALS taking control over me. I can’t think of anything else, I’m convinced I have it, I cry every night, my partner is scared (of my reaction, not of the ALS itself). I need help.
So, beginning August I started with major lower and middle back pain, had two very precise and painful points that wuld not go away with the usual medication (ibuprfene, paracetamol,…). I still have time pain. I did an MRI of the back, it showed protusions at the lower level as well some deterioration in the middle level (did not do the cervical area, but 4 months ago it just showed mild arthrose). However I’ve had pain in the cervical area regularly on a chronic bases, and a lot of tension in the shoulders usually.
Beginning September, I started feeling a kind of weakness in my left arm. It feels heavy. At the same time, on the left leg, several times for day a kind of numbness (I can still feel my skin , no sensorial issue, it just feels weird ) on a very precise spot on the feet. Then, pain in the left arm, like strong cramps in the upper and lower part of the arm, sometimes it’s so strong that it feels like my skin is burning. Cramps similar in the left leg.
-My arm keeps being weak, I can’t properly take objects because the hand is so “tensed” that my fingers feel like tensed too. I don’t drop things down, but I’m having troubles doing things that I used to do normally, because my arm starts hurting (like muscle tiredness). These things are for instance hanging my clothes, emptying the dishwasher, or tipiing on my computer. I do much more mistakes, again because the left hand ‘hurts’, therefore the fingers just aren’t precise. It feels a bit like muscle soreness, hard to describe. Initially but rather rarely I also had in some fingers a burning/itchy feeling) but not anymore. Now it’s mostly this muscle soreness/fatigue sensation and heavy arm/disabled hand.
- Quickly I get a similar feeling in my left leg, my walking has changed because I am using more the right foot. I feel unstable when I walk, very careful in the stairs when I go down, and it my legs are tired very quickly when I go up.
When sitting, I get several times per day this very weird feeling of a “thrill” going down both my legs at the same time.
Since 3 weeks, I’ve started to have fasciculations. It started on the right side mostly (back, leg and in the pelvis area) and now I have time mostly when I’m laying, but everywhere. A lot of them in the stomach area. I can not “see” the muscle fasciculating, I just feel it.
I don’t have a very good transit, I’m constipated (I usually am not very well with this, but I can really feel it that it’s way way worse than usual).
Since three days, I’m having troubles swallowing. I do swallow, but there’s something blocking the way. It feels like like something on the palate in the mouth is not ok, I can’t quite explain it, it’s not in the throat itself. But the result is, that I have this trouble swallowing my own saliva , water feels also a bit painful, and aliments ok but also painful (it burns a bit further down in the oesophage and my nose has been quite full too). I’ve never had this feeling, it is very weird but it’s not like a throat infection even though my throat does hurt a bit.
I”ve seen a neuro 3 weeks ago (no constipation/swallowing issues at that time) : he did the test with the nerves (nerve conduction?), neuro tests (reflexs), and an EMG of muscles in the upper arm left, and two muscles in the right leg. All came back normal except for a tiny thing he saw in the EMG but said it could come from the cervicals (did not understand exactly what but he did not seem worried by it and said it’s not very significant.). Also had a lumbal ponction, an MRI of the skull, loads of blood tests. All came back normal.
I have to see the neuro again in 10 days, he wants to re –assess my symptoms and do the same tests again and depending on that he suggested that a stay at the hospital could be possible. I can see that he is worried and sceptical, because he can’t find any reason for my symptoms. I ‘ve asked him about ALS directly, he said “forget about it, you don’t have it”, and when I asked why, he said that I’m too young and that ALS does not progresses that rapidly. I was not very much convinced, it felt more like he was trying to reassure me and himself.
Of course, all the symptoms above make me thing that I have a very high probability to have ALS. I had managed to calm my self down a bit but now with the swallowing thing on the top, when I put all the symptoms together I’m just horrified to see how good they match. In addition, the only exam that could have reassured me (EMG) was done incompletely and not totally clean.
Questions: what do you think? I’ve read that bulbar and spinal form usually do not come together at the same time, but with exceptions. I’ve also read that fasciculations do not mean much as such, but in correlation with all my other symptoms, I wonder. Earlier today I tried lifting my arm and doing all sorts of exercises and I could do them all, so I tend to hope that my “weakness” is just muscle tiredness and not clinical weakness? (I have same strength on both sides when doctos do the test, but the left arm hurts when I do the test).
If someone read all this, please be assured that you would help a lost, very anxious and freaked out soul out here if you could answer me (frankly, of course).
thank you in advance and lots of thoughts for everyone on this forum.
shine:sad:
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