Gerbera
Member
- Joined
- Oct 2, 2019
- Messages
- 13
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- SW
- State
- ST
- City
- Göteborg
I have now seen a neurologist and GP whom both took all the possible blood tests (thyroid, parathyroid, calcium, lyme, you name it) and nothing was found. Neuro spent almost an hour with me and was seemingly upset by the treatment I've had so far. She said I should've been sent to at least MRI immediately the first time I came to look for help.
Neuro found athrophy in my shoulder/shoulder blade area. This was a surprise for me, as I haven't had any problems with that area, I thought at first. But now to my distress I remember that during the time my fasciculations and cramps in my feet and legs started, I wasn't able to carry my own old back bag when hiking. It felt like it's going to crush me. We concluded that it was somehow pinching some of my nerves. I took my spouse's far heavier back that sat differently and it was ok. I was, however, weak during the whole hike. Me, who has the will power of an elephant. But yes, fasciculations are not als, and als don't feel, so no more on that.
Then she found athropy where I've been symptomatic, on my left foot. The arch bit on the inner side is seemingly thinner, there's a split or a cave in the middle. My right is plump and healthy looking. But the weirdest thing is that I have no lost functions there. I can do anything with my foot. It has just been stiff (what I called as "alien" in the beginning), super stiff.
I've slurred my words, but this does not happen all the time. But when it does, there's no question about it. "Did somebody say something". No, a group of people laughed their pants off when it happened. I was of course scared to death. "R" is most effected.
Neuro brought up MND as I have no sensory symptoms at all. In January I was over the moon as I felt that my feet were buzzing. I said to myself that now there's no way it's als. Unfortunately I happened to notice once during this "buzzing" that my skin was mowing very rapidly. Putting finger where the buzzing approximately always was confirmed that it was just very fast and long fasciculation in fine area. There's a handful of them all the time. All the time.
All the above I wrote to justify why I wanted to make this 2nd posting. I would really need support and I have no other place to ask.
First, I'm really suspicious of this athrophy in my foot. Wouldn't there be weakness present if it was als?
Second, since autumn I cut my excercise to minimum. Before I went to gym and played ball games weekly. I was so fatigued I've never been in my life (note: I've been doing the same regime for years, there was no signs of overdoing anything, my pulse was normal, I wasn't out of breath, my muscles just were weak). Now I've came back to actually feeling healthy. I have no strenght issues nor am I fatigued. How would I feel healthier and in better strenght if it was als?
Third question that is most important to me: There is something really wrong with the muscles that control my neck and windpipe. If I swallow, I can feel how the muscles feel like the motion is not complete. Something is left behind. Then, all of the sudden, the tension is released and the muscles "pop" back to where they should've move already. This can happen to the muscles just under my jaw, lower the throath or deeper there. It's not painful but the muscles sort of "zap" back like a rubber band. It's nasty :/ Another thing is that sometimes when I move my head, it feels like my head is going to fall off. This has been really challenging to explain to the doctors but I finally understood to compare it to, for example, a knee. Imagine to straighten your leg. The motion is normally smooth. But here, the motion is disjointed, there's resistance that gives in, another resistance point... etc.. This is how my neck behaves and neuro was thinking stiff muscles preventing some of the discs to move freely .. Has anyone had anything, even remotely similar with their throath and or neck?
I want to thank anyone who reaches out for me. I know that what ever is my faith I won't forget this desease or the people who are affected by it till the day I die.
Neuro found athrophy in my shoulder/shoulder blade area. This was a surprise for me, as I haven't had any problems with that area, I thought at first. But now to my distress I remember that during the time my fasciculations and cramps in my feet and legs started, I wasn't able to carry my own old back bag when hiking. It felt like it's going to crush me. We concluded that it was somehow pinching some of my nerves. I took my spouse's far heavier back that sat differently and it was ok. I was, however, weak during the whole hike. Me, who has the will power of an elephant. But yes, fasciculations are not als, and als don't feel, so no more on that.
Then she found athropy where I've been symptomatic, on my left foot. The arch bit on the inner side is seemingly thinner, there's a split or a cave in the middle. My right is plump and healthy looking. But the weirdest thing is that I have no lost functions there. I can do anything with my foot. It has just been stiff (what I called as "alien" in the beginning), super stiff.
I've slurred my words, but this does not happen all the time. But when it does, there's no question about it. "Did somebody say something". No, a group of people laughed their pants off when it happened. I was of course scared to death. "R" is most effected.
Neuro brought up MND as I have no sensory symptoms at all. In January I was over the moon as I felt that my feet were buzzing. I said to myself that now there's no way it's als. Unfortunately I happened to notice once during this "buzzing" that my skin was mowing very rapidly. Putting finger where the buzzing approximately always was confirmed that it was just very fast and long fasciculation in fine area. There's a handful of them all the time. All the time.
All the above I wrote to justify why I wanted to make this 2nd posting. I would really need support and I have no other place to ask.
First, I'm really suspicious of this athrophy in my foot. Wouldn't there be weakness present if it was als?
Second, since autumn I cut my excercise to minimum. Before I went to gym and played ball games weekly. I was so fatigued I've never been in my life (note: I've been doing the same regime for years, there was no signs of overdoing anything, my pulse was normal, I wasn't out of breath, my muscles just were weak). Now I've came back to actually feeling healthy. I have no strenght issues nor am I fatigued. How would I feel healthier and in better strenght if it was als?
Third question that is most important to me: There is something really wrong with the muscles that control my neck and windpipe. If I swallow, I can feel how the muscles feel like the motion is not complete. Something is left behind. Then, all of the sudden, the tension is released and the muscles "pop" back to where they should've move already. This can happen to the muscles just under my jaw, lower the throath or deeper there. It's not painful but the muscles sort of "zap" back like a rubber band. It's nasty :/ Another thing is that sometimes when I move my head, it feels like my head is going to fall off. This has been really challenging to explain to the doctors but I finally understood to compare it to, for example, a knee. Imagine to straighten your leg. The motion is normally smooth. But here, the motion is disjointed, there's resistance that gives in, another resistance point... etc.. This is how my neck behaves and neuro was thinking stiff muscles preventing some of the discs to move freely .. Has anyone had anything, even remotely similar with their throath and or neck?
I want to thank anyone who reaches out for me. I know that what ever is my faith I won't forget this desease or the people who are affected by it till the day I die.