Todi
New member
- Joined
- Mar 4, 2008
- Messages
- 4
- Reason
- Learn about ALS
- Country
- SE
- State
- Småland
- City
- Oskarshamn
Hello there, im sorry for the long post but please read it if you have time, i really need some answers from people "in the know".
My name is Joakim and i will be 25 years old this April, im from Sweden so please excuse any errors in grammar or spelling.
Im writing to ask if the symptoms i have sounds like ALS, why or why not and if something excludes it completetly or confirmes it completely.
The progress has been going on for either a year and a half or 4-5 months depending on if one symptom is linked or separate to the rest. Im not convinced, even though they are similair they are so spaced out in time that it might be two different things.
The following are the symptoms i have in chronological order from first discovered symptom to last.
1 - A year and a half ago, during the summer, i suddenly started to loose sensation in the front of my left thigh. This plus a constant tingling sensation that could border on crawling/buzzing/burning, not painfull, but definitely frustrating. It pretty much felt like touching the skin through a layer of cloth or if you compare the sense of touch to hearing i guess you could say that the highest notes where missing. I also got a very high threshold for pain to the point that i could probably stick a needle in my thigh without it hurting more than a normal pinch anywhere else. The tingling sensations stopped sometime in the last year only to resurface when the same sensation started being felt in both my legs later on. Since it passes almost a year betwean this and the next symptom that i felt i dont know if they are linked or separate things. Everything is identical feelingwise but much worse in my thigh and it is also constant there, where as everywhere else it has ups and downs in degree.
2 - Both hands experiences loss of sensation in the same manner as my left thigh only not as severe. Plus a tingling sensation. Usually in pinky and ring finger in both hands but could be present in the entire hand on both sides. This is what started 4-5 months ago.
3 - Twitching muskles, hard to pinpoint since i think i have had this happen all my life. But at the same time as the numbness in my hands started i started to really notice this and it has gotten worse after that. So what i remember from before might be something everyone experiences to some degree? The twitches are usually small and not visible, but larger twitches do happen acouple of times a day.
4 - Loss of this peak sensation + the tingling speads to the front of my forearms, up the left side of my face and is later experienced in both legs. From the face it seems to spread up over my scalp and unto my neck. But only my left side at this point.
5 - Stiff neck, backpains. I have had a bad back since i can remember but this is different. I get shots of pain i the middle part of the back if i bend it backwards and is constantly sore in the lower part.
6 - Gripstrength lowered, later generall strenghtloss is noticed. Also seem to lose some balance and motorskills. The face looses strength on the left side and the numbness and tingling makes some advances to the right side, mostly around the nose and right cheekbone.
7 - Lack of strength in legs slowly but constantly gets worse, feels like im constantly on the verge of cramping up but it hasnt happened yet. Somewhere around here my jaw starts to get weaker, i get tired when chewing gum or talking alot.
8 - Alittle sore throat and alittle harder to swallow.
9 - Shortness of breath.
10 - Weak headaces most of the time.
The loss of the "higher notes" of sensation mostly in forearms, legs and face is generally present all the time, as is the weakened legs. However all the other symptoms comes and goes. The tingling and loss of sensation usually also gets worse in the same degree as the other symptoms. These periods are first and foremost day/night but also seems to be "biweekly". The symptoms generally gets worse the longer the day progresses and i seem to also have especially bad nights every other weekend or so.
One weekend about 3 weeks ago i went to the emergency room because i paniked when i started having a harder time breathing for the first time. While lying on the bed waiting for the doctor to come see me, my arms and legs probably lost about 75% strength. My right hand curled up and looked like the hands of some people with cerebral palsy. I could just barely straighten it out for it to just fall right back into the curled position again. There where no cramps, it just lost all strength to straighten itself out. The legs where so weak i probably wouldnt have been able to support myself on them.
This went on for about 5-15 minutes with the most severe things such as the curled up hand stoping first at about a minute or two. The intense weakness sustained for about 10-15 minutes. After that i was back to my normal weakened state again and could walk home after the doctor had seen me.
My other medical history involves some bloodtests that came back "more or less normal" according to the doctor. An MRI of the brain that showed only a light sinus infection and some regual medical testing such as reflexes, balance and eye exams all of which seemed fine. The doctor did the babinski reflex test but i cant remember what result he got, i wasnt paying attention since i didnt know what the heck he was doing to me, felt like he was gonna rip the skin of my foot with that thing. However when i got home i checked it out on the internet and tried it myself. I get a normal reaction on my left foot but the wrong reaction on my right. This freaks me out since it seems to be a pretty serious reflex to get wrong. The normal "hit the knee" reflexes are pretty much fine, im not sure since i usually dont test my reflexes when im healthy. But if i HAD to choose i would say they are probably less active than hyperactive.
Last weekend i had another freaky experience. I was annoyed cause it felt like i couldnt breath normaly so i started to hyperventilate in frustration. Suddenly it felt like i had a thousand fireants crawling around my ears biting me. This spread to my face, mosly around my mouth, untill suddenly my upper lip got all stiff like it cramped up. This cramp lasted for about a minute and then went away. I tried again alittle while after that and the same thing started to happen again so i stopped. So apparently this is something i can do whenever now.
Personally i think i either have ALS or Lyme disease. There are some things that corresponds to both but also some things that, as far as i know, are alittle bit weird for both.
For instance i dont know of any tick bite, i dont remember any skin abnormalities, no real fever etc. My hope here is that as far as i understand it lyme can be "dormant" for years before the symptoms starts to show themselves.
But what i gather from ALS touch isnt supposed to be affected, but i often read about "numbness" so im alittle unsure about that part. And i dont know if ALS gets worse at night time like what i have does, this is usually a standard lyme symptom as far as i know.
However one of the bloodtests was for lyme, and it came back negative altough from what i have read lyme is notoriously hard to detect so might just be a wrong result.
I was given antibiotics right away by the first doctor i saw as she was convinced it was lyme, they seemed to help at first but after about half the prescription i started to have the tingling sensation back in my legs, a couple of days after that i got the phonecall that the tests where back and i was negative for lyme so i should stop eating the Doxyferm. I continued a couple of days after that since it had seemed that they where helping in the beginning but now almost all of the symptoms where back so i stopped eating them. Now however it feels like its worse again, not sure though since it has been up and down so many times the past few months and i have bad memory.
Thanks.
//Joakim.
My name is Joakim and i will be 25 years old this April, im from Sweden so please excuse any errors in grammar or spelling.
Im writing to ask if the symptoms i have sounds like ALS, why or why not and if something excludes it completetly or confirmes it completely.
The progress has been going on for either a year and a half or 4-5 months depending on if one symptom is linked or separate to the rest. Im not convinced, even though they are similair they are so spaced out in time that it might be two different things.
The following are the symptoms i have in chronological order from first discovered symptom to last.
1 - A year and a half ago, during the summer, i suddenly started to loose sensation in the front of my left thigh. This plus a constant tingling sensation that could border on crawling/buzzing/burning, not painfull, but definitely frustrating. It pretty much felt like touching the skin through a layer of cloth or if you compare the sense of touch to hearing i guess you could say that the highest notes where missing. I also got a very high threshold for pain to the point that i could probably stick a needle in my thigh without it hurting more than a normal pinch anywhere else. The tingling sensations stopped sometime in the last year only to resurface when the same sensation started being felt in both my legs later on. Since it passes almost a year betwean this and the next symptom that i felt i dont know if they are linked or separate things. Everything is identical feelingwise but much worse in my thigh and it is also constant there, where as everywhere else it has ups and downs in degree.
2 - Both hands experiences loss of sensation in the same manner as my left thigh only not as severe. Plus a tingling sensation. Usually in pinky and ring finger in both hands but could be present in the entire hand on both sides. This is what started 4-5 months ago.
3 - Twitching muskles, hard to pinpoint since i think i have had this happen all my life. But at the same time as the numbness in my hands started i started to really notice this and it has gotten worse after that. So what i remember from before might be something everyone experiences to some degree? The twitches are usually small and not visible, but larger twitches do happen acouple of times a day.
4 - Loss of this peak sensation + the tingling speads to the front of my forearms, up the left side of my face and is later experienced in both legs. From the face it seems to spread up over my scalp and unto my neck. But only my left side at this point.
5 - Stiff neck, backpains. I have had a bad back since i can remember but this is different. I get shots of pain i the middle part of the back if i bend it backwards and is constantly sore in the lower part.
6 - Gripstrength lowered, later generall strenghtloss is noticed. Also seem to lose some balance and motorskills. The face looses strength on the left side and the numbness and tingling makes some advances to the right side, mostly around the nose and right cheekbone.
7 - Lack of strength in legs slowly but constantly gets worse, feels like im constantly on the verge of cramping up but it hasnt happened yet. Somewhere around here my jaw starts to get weaker, i get tired when chewing gum or talking alot.
8 - Alittle sore throat and alittle harder to swallow.
9 - Shortness of breath.
10 - Weak headaces most of the time.
The loss of the "higher notes" of sensation mostly in forearms, legs and face is generally present all the time, as is the weakened legs. However all the other symptoms comes and goes. The tingling and loss of sensation usually also gets worse in the same degree as the other symptoms. These periods are first and foremost day/night but also seems to be "biweekly". The symptoms generally gets worse the longer the day progresses and i seem to also have especially bad nights every other weekend or so.
One weekend about 3 weeks ago i went to the emergency room because i paniked when i started having a harder time breathing for the first time. While lying on the bed waiting for the doctor to come see me, my arms and legs probably lost about 75% strength. My right hand curled up and looked like the hands of some people with cerebral palsy. I could just barely straighten it out for it to just fall right back into the curled position again. There where no cramps, it just lost all strength to straighten itself out. The legs where so weak i probably wouldnt have been able to support myself on them.
This went on for about 5-15 minutes with the most severe things such as the curled up hand stoping first at about a minute or two. The intense weakness sustained for about 10-15 minutes. After that i was back to my normal weakened state again and could walk home after the doctor had seen me.
My other medical history involves some bloodtests that came back "more or less normal" according to the doctor. An MRI of the brain that showed only a light sinus infection and some regual medical testing such as reflexes, balance and eye exams all of which seemed fine. The doctor did the babinski reflex test but i cant remember what result he got, i wasnt paying attention since i didnt know what the heck he was doing to me, felt like he was gonna rip the skin of my foot with that thing. However when i got home i checked it out on the internet and tried it myself. I get a normal reaction on my left foot but the wrong reaction on my right. This freaks me out since it seems to be a pretty serious reflex to get wrong. The normal "hit the knee" reflexes are pretty much fine, im not sure since i usually dont test my reflexes when im healthy. But if i HAD to choose i would say they are probably less active than hyperactive.
Last weekend i had another freaky experience. I was annoyed cause it felt like i couldnt breath normaly so i started to hyperventilate in frustration. Suddenly it felt like i had a thousand fireants crawling around my ears biting me. This spread to my face, mosly around my mouth, untill suddenly my upper lip got all stiff like it cramped up. This cramp lasted for about a minute and then went away. I tried again alittle while after that and the same thing started to happen again so i stopped. So apparently this is something i can do whenever now.
Personally i think i either have ALS or Lyme disease. There are some things that corresponds to both but also some things that, as far as i know, are alittle bit weird for both.
For instance i dont know of any tick bite, i dont remember any skin abnormalities, no real fever etc. My hope here is that as far as i understand it lyme can be "dormant" for years before the symptoms starts to show themselves.
But what i gather from ALS touch isnt supposed to be affected, but i often read about "numbness" so im alittle unsure about that part. And i dont know if ALS gets worse at night time like what i have does, this is usually a standard lyme symptom as far as i know.
However one of the bloodtests was for lyme, and it came back negative altough from what i have read lyme is notoriously hard to detect so might just be a wrong result.
I was given antibiotics right away by the first doctor i saw as she was convinced it was lyme, they seemed to help at first but after about half the prescription i started to have the tingling sensation back in my legs, a couple of days after that i got the phonecall that the tests where back and i was negative for lyme so i should stop eating the Doxyferm. I continued a couple of days after that since it had seemed that they where helping in the beginning but now almost all of the symptoms where back so i stopped eating them. Now however it feels like its worse again, not sure though since it has been up and down so many times the past few months and i have bad memory.
Thanks.
//Joakim.