EpicWorry
New member
- Joined
- Feb 19, 2020
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- BC
- City
- UK
Hi everyone, 39yo male here. I've been experiencing some strange, and possibly unconnected, symptoms over roughly the past 4-5 months, some fasciculations started at Christmas which have now got me quite concerned when taken into consideration with other things.
October(ish) - I started getting some strange headaches and vertigo/nausea, combined with tinnitus and phantom smells along with palpitations. After some googling I convinced myself that I had a brain tumor and went to the doctor. He did some testing such as strength testing, touching my nose and looking in my eyes etc. One of the tests he performed was my leg out straight with him pushing my ankle towards me whilst I placed my chin on my chest, when he did that with my right leg I got some pain up my leg and through my right buttock, he mentioned something about sciatic response but didn't elaborate or seem concerned. What he did note during his tests was that I had horizontal nystagmus that was fatigable. On the basis of this he diagnosed me with Labyrinthitis.
Over the next few days the phantom smells persisted so I went back to see the same Dr, he could see I was concerned so referred me for an MRI to rule out brain tumor. He said he was not concerned that I had one and was just referring me for my peace of mind; he said if anything I had some very outlying periphery symptoms of MS but not enough to convince me that I had it.
I visited another Dr at the same clinic the following week as the symptoms had worsened again and realised that I have been suffering from some 'brain fog' type symptoms for a while along with random pain all over, I had also started waking up with numb/tingling ring and little fingers on both hands combined with stiff hamstring on my right leg. He did some more testing on me and I had high blood pressure but again did not think I had a brain tumor. During his clinical exam he tested my reflexes and did not mention anything was out of the ordinary, however I remember when he tested my right knee that my response on my right leg was far more pronounced that my left. I didn't realise that this was bad and he never mentioned it, I actually giggled at it and his response was "Ha yeah, you can't help that." During this period I would also get sensations that a patch of skin on my right cheek was burning or irritated, or that the small of my back was very cold but neither were to the touch. I had the odd feeling on my cheek again yesterday.
I had the MRI the following week and the results were clear for brain tumor so I was incredibly happy, this period of incredible stress was over. The phantom smells and headaches also appear to have disappeared. I had chance to see the referral letter and it only mentioned brain tumor and not MS so I don't know if the radiologist would even look for evidence of this if it wasn't on the referral?
December - On Christmas eve I noticed whilst using my phone that my thumb was a little shaky whilst typing so I looked up why this may be and found that twitches/fasciculations are associated with ALS. I realised I may have had the odd fasciculation every now and again before but nothing seriously recurring. Over the Christmas holiday the fasciculations intensified and gradually crept all over but mostly in my legs; every time I sat on the sofa even after just a walk to the kitchen I noticed my legs tingling like crazy pins and needles and I also noticed I have developed a very scalloped tongue but it does not look smaller than usual or interfere with anything. I put this down to possibly stress.
January - They subsided in intensity early in January but were still present and moving to new areas such as the middle of my forehead (looked strange in the mirror) and even though I could still move my forehead it felt 'weird' and kind of numb. One day I was drying my hands and my right thumb started spasming back and forth a couple of times very strongly, it did this again a few minutes later but has never done this since.
Present Day - The fasciculations have continued sporadically throughout the days, including some days where I thought they were significantly improving. They can appear anywhere on my body including pecs, abs, anus, face and lips but are mostly only really noticeable when sitting down or not moving much, even the facial ones. The fasciculations can be anything from a random flutter near my knee lasting a second to big 'zaps' in a tricep that happen every 5-10 seconds for a minute. What is causing concern recently is every day when I wake up I have a very strange tingling or 'fizzing' feeling all in my left leg which gradually goes off when up and moving about; the tingling when I sit down is still present in my legs and, to a lesser extent, my arms and hands. I still occasionally get the numbness and tingling in ring and pinky on one or both hands and it feels like something possibly pinching my finger nails, or some mornings I wake up with very bad lower back pain.
I don't really have any weakness or atrophy that I can detect and I have no issue with opening bottles/buttons or anything, the only thing I suppose it recently I have started exercising again after a 2 year break and I am fatiguing quicker than I expected; I also have a higher than normal resting heart rate and on occasions I can feel my heartbeat down the left hand side of my body and into my fingertips which almost feels like a fasciculation but is in time with my heart. Another weird thing is that on a few rare occasions I have had difficulty controlling my body temperature which can either be feeling very hot and sweaty (but not out of breath) after mild exertion like a short 5 min walk or feeling very cold when the room is normal temperature. I have also had very occasional night sweats but not for quite a while. There's possibly more symptoms but I can't think right now.
I took my children to the zoo yesterday and managed to push a double stroller up some very steep hills without failure, my right calf muscle felt tight beforehand and for the rest of the day but it performed and still feels quite tight when I walk today, when I feel it with my hand it feels as soft as the other one. All these recent things had led me to look into possible causes again and everything led back to ALS as I couldn't seem to make my my symptoms fit with anything less sinister, for example:
MS? No, I had a clear MRI.
BFS? No, I had an uneven knee reflex.
Trapped nerve? What about my face, and then it wouldn't be all over my body.
And so on.....
Sorry if this sounds rambled and garbled I apologise, I'm incredibly scared about this and feel literally sick with worry. I appreciate any insight anybody can provide.
October(ish) - I started getting some strange headaches and vertigo/nausea, combined with tinnitus and phantom smells along with palpitations. After some googling I convinced myself that I had a brain tumor and went to the doctor. He did some testing such as strength testing, touching my nose and looking in my eyes etc. One of the tests he performed was my leg out straight with him pushing my ankle towards me whilst I placed my chin on my chest, when he did that with my right leg I got some pain up my leg and through my right buttock, he mentioned something about sciatic response but didn't elaborate or seem concerned. What he did note during his tests was that I had horizontal nystagmus that was fatigable. On the basis of this he diagnosed me with Labyrinthitis.
Over the next few days the phantom smells persisted so I went back to see the same Dr, he could see I was concerned so referred me for an MRI to rule out brain tumor. He said he was not concerned that I had one and was just referring me for my peace of mind; he said if anything I had some very outlying periphery symptoms of MS but not enough to convince me that I had it.
I visited another Dr at the same clinic the following week as the symptoms had worsened again and realised that I have been suffering from some 'brain fog' type symptoms for a while along with random pain all over, I had also started waking up with numb/tingling ring and little fingers on both hands combined with stiff hamstring on my right leg. He did some more testing on me and I had high blood pressure but again did not think I had a brain tumor. During his clinical exam he tested my reflexes and did not mention anything was out of the ordinary, however I remember when he tested my right knee that my response on my right leg was far more pronounced that my left. I didn't realise that this was bad and he never mentioned it, I actually giggled at it and his response was "Ha yeah, you can't help that." During this period I would also get sensations that a patch of skin on my right cheek was burning or irritated, or that the small of my back was very cold but neither were to the touch. I had the odd feeling on my cheek again yesterday.
I had the MRI the following week and the results were clear for brain tumor so I was incredibly happy, this period of incredible stress was over. The phantom smells and headaches also appear to have disappeared. I had chance to see the referral letter and it only mentioned brain tumor and not MS so I don't know if the radiologist would even look for evidence of this if it wasn't on the referral?
December - On Christmas eve I noticed whilst using my phone that my thumb was a little shaky whilst typing so I looked up why this may be and found that twitches/fasciculations are associated with ALS. I realised I may have had the odd fasciculation every now and again before but nothing seriously recurring. Over the Christmas holiday the fasciculations intensified and gradually crept all over but mostly in my legs; every time I sat on the sofa even after just a walk to the kitchen I noticed my legs tingling like crazy pins and needles and I also noticed I have developed a very scalloped tongue but it does not look smaller than usual or interfere with anything. I put this down to possibly stress.
January - They subsided in intensity early in January but were still present and moving to new areas such as the middle of my forehead (looked strange in the mirror) and even though I could still move my forehead it felt 'weird' and kind of numb. One day I was drying my hands and my right thumb started spasming back and forth a couple of times very strongly, it did this again a few minutes later but has never done this since.
Present Day - The fasciculations have continued sporadically throughout the days, including some days where I thought they were significantly improving. They can appear anywhere on my body including pecs, abs, anus, face and lips but are mostly only really noticeable when sitting down or not moving much, even the facial ones. The fasciculations can be anything from a random flutter near my knee lasting a second to big 'zaps' in a tricep that happen every 5-10 seconds for a minute. What is causing concern recently is every day when I wake up I have a very strange tingling or 'fizzing' feeling all in my left leg which gradually goes off when up and moving about; the tingling when I sit down is still present in my legs and, to a lesser extent, my arms and hands. I still occasionally get the numbness and tingling in ring and pinky on one or both hands and it feels like something possibly pinching my finger nails, or some mornings I wake up with very bad lower back pain.
I don't really have any weakness or atrophy that I can detect and I have no issue with opening bottles/buttons or anything, the only thing I suppose it recently I have started exercising again after a 2 year break and I am fatiguing quicker than I expected; I also have a higher than normal resting heart rate and on occasions I can feel my heartbeat down the left hand side of my body and into my fingertips which almost feels like a fasciculation but is in time with my heart. Another weird thing is that on a few rare occasions I have had difficulty controlling my body temperature which can either be feeling very hot and sweaty (but not out of breath) after mild exertion like a short 5 min walk or feeling very cold when the room is normal temperature. I have also had very occasional night sweats but not for quite a while. There's possibly more symptoms but I can't think right now.
I took my children to the zoo yesterday and managed to push a double stroller up some very steep hills without failure, my right calf muscle felt tight beforehand and for the rest of the day but it performed and still feels quite tight when I walk today, when I feel it with my hand it feels as soft as the other one. All these recent things had led me to look into possible causes again and everything led back to ALS as I couldn't seem to make my my symptoms fit with anything less sinister, for example:
MS? No, I had a clear MRI.
BFS? No, I had an uneven knee reflex.
Trapped nerve? What about my face, and then it wouldn't be all over my body.
And so on.....
Sorry if this sounds rambled and garbled I apologise, I'm incredibly scared about this and feel literally sick with worry. I appreciate any insight anybody can provide.
