barrymac20
Member
- Joined
- Sep 15, 2016
- Messages
- 12
- Reason
- Learn about ALS
- Country
- Ire
- State
- na
- City
- Dublin
Hi all. Apologies in advance for taking up your time.
I'll start by saying my name is Barry. I'm 36 , am married and have 5 year old and 1 year old daughters.
I have some ongoing worrying symptoms and questions that I wanted to ask you about. I'll try put in chronological order to make it as clear as possible
I had a virus earlier in the summer that affected me bad (CMV was the virus). It had me rocked for 5 or 6 weeks big time. In and out of work/bed/docs etc.
I was extremely anxious during this time as I had cancer a few years ago (2012 with Chemo) and due to it taking it very slow to get bloods etc back my anxiety levels had me up the wall. The virus affected my liver and they tested me for Hep B etc which all came back clear. But again, due to result delays and unnecessary anxiety I was in bad shape.
Anyways. I got the news after 5 weeks or so that it was CMV, pretty common apparently etc. Was delighted. Thats the back ground that proceeded my worrying "ALS" related symptoms.
Week 1 - 2 days after being able to "relax" over the viral thing I got a sudden pain in my forearm. An hour later my whole left side (arm and leg) went all tingly and felt strange.
I went to hospital but they let me go after clear bloods and no clinical weakness or sign of stroke etc. They said it was post viral.
Week 1 - 2 days later I was eating a takeaway and suddenly had trouble swallowing a piece of food. This scared the sh1t out of me. It lingered noticeably for a few days (the problem, not the food) but came and went in "severity". A number of weeks later and I'm not sure if that's totally gone or if I've just naturally got used to the different feeling of swallowing.
Around the same time as this the strange feeling in my left side had turned into what I felt was weakness.
Week 2 - Due to the "weakness" and swallowing issue I was sent back to hospital where they carried out more tests. Clear brain CT and MRI and clear Spinal cord MRI. (Although it did mention on report something about possible mild scoliosis but also mentioned this could have been the way i was lying during exam)(Also something about one image showing high signal on cord but wasn't evident on different image - report was issued as normal)
Again, no clinical weakness so they sent me on my merry way the next day. They gave me Xanax for 3 days which did help me to relax a bit but I had been reading a bit about MND in the mean time and was getting even more worried!!
I'll add that I had been having some muscle twitches at this stage but they seem to be popping up in different places but mostly my arms and hands
Week 3 - As the days went by I started thinking that this was actual weakness in my left arm. I was gauging this based on the fact that it was more of a struggle to carry my one year old and had to keep shifting her to my right side. Also started noticing my voice a bit shaky and some strange feelings around my jaw.
Can I also say that it was around this time that I realised my voice was a bit hoarse and had been on and off for a few weeks.
Was back with my GP that week and she told me its viral and stress and anxiety etc. She prescribed me some valium which helped me to relax and I stayed off google for a full week!!
Week 4 - Back to my docs and she was happy to reduce my valium dose but as I was still having the "weakness" and some throbbing around my throat she said she'd arrange a nerve conduction study and emg - subsequent appointment arranged for May 2017!! Was also noticing my hands a bit fiddly with money and typing etc that week.
Week 4/5 - on holidays in the sun for 10 days thinking i'd relax but I then started feeling like my voice was slurring a bit, or maybe its a lisp. hard to tell. No one commented apart from one time when I'd had a drink. Was a bit hard to relax when I was hearing this every time I spoke.
I will say that it was definitely becoming more of a challenge to sound like I was speaking normally. In other words my voice sounds different and on the slurry side. Also was noticing fatigue on my arm when drying my daughters hair with hair dryer.
Week 6 (This week) - Both shoulders now feel weak/different, can still lift arms etc. Joints in both hands feeling stiff and sore (especially left) but I'm typing away here with not much difficulty, Just not as precise as I used to be. Last night was difficult to hold phone in left hand which was a first and frightened me.
I'll say that the issues in my left leg have also been ongoing. Mostly cramping in my calf on and off. Ankle feels a bit weak but this could be due to a sports injury I had previously.
Anyways, in general my anxiety levels are off the charts although the valium does help with that a bit. Also feel really tired all the time.
Right now as I sit here my left hand feels stiff, my left ankle and calf are throbbing and my speech is "slurry" nearly all the time. I think people notice but havent said anything. Twitches every now and then also.
I apologise for the long post but wanted to try get everything out there. Any advice would be great as I'll be waiting a while for my EMG!!
Barry
I'll start by saying my name is Barry. I'm 36 , am married and have 5 year old and 1 year old daughters.
I have some ongoing worrying symptoms and questions that I wanted to ask you about. I'll try put in chronological order to make it as clear as possible
I had a virus earlier in the summer that affected me bad (CMV was the virus). It had me rocked for 5 or 6 weeks big time. In and out of work/bed/docs etc.
I was extremely anxious during this time as I had cancer a few years ago (2012 with Chemo) and due to it taking it very slow to get bloods etc back my anxiety levels had me up the wall. The virus affected my liver and they tested me for Hep B etc which all came back clear. But again, due to result delays and unnecessary anxiety I was in bad shape.
Anyways. I got the news after 5 weeks or so that it was CMV, pretty common apparently etc. Was delighted. Thats the back ground that proceeded my worrying "ALS" related symptoms.
Week 1 - 2 days after being able to "relax" over the viral thing I got a sudden pain in my forearm. An hour later my whole left side (arm and leg) went all tingly and felt strange.
I went to hospital but they let me go after clear bloods and no clinical weakness or sign of stroke etc. They said it was post viral.
Week 1 - 2 days later I was eating a takeaway and suddenly had trouble swallowing a piece of food. This scared the sh1t out of me. It lingered noticeably for a few days (the problem, not the food) but came and went in "severity". A number of weeks later and I'm not sure if that's totally gone or if I've just naturally got used to the different feeling of swallowing.
Around the same time as this the strange feeling in my left side had turned into what I felt was weakness.
Week 2 - Due to the "weakness" and swallowing issue I was sent back to hospital where they carried out more tests. Clear brain CT and MRI and clear Spinal cord MRI. (Although it did mention on report something about possible mild scoliosis but also mentioned this could have been the way i was lying during exam)(Also something about one image showing high signal on cord but wasn't evident on different image - report was issued as normal)
Again, no clinical weakness so they sent me on my merry way the next day. They gave me Xanax for 3 days which did help me to relax a bit but I had been reading a bit about MND in the mean time and was getting even more worried!!
I'll add that I had been having some muscle twitches at this stage but they seem to be popping up in different places but mostly my arms and hands
Week 3 - As the days went by I started thinking that this was actual weakness in my left arm. I was gauging this based on the fact that it was more of a struggle to carry my one year old and had to keep shifting her to my right side. Also started noticing my voice a bit shaky and some strange feelings around my jaw.
Can I also say that it was around this time that I realised my voice was a bit hoarse and had been on and off for a few weeks.
Was back with my GP that week and she told me its viral and stress and anxiety etc. She prescribed me some valium which helped me to relax and I stayed off google for a full week!!
Week 4 - Back to my docs and she was happy to reduce my valium dose but as I was still having the "weakness" and some throbbing around my throat she said she'd arrange a nerve conduction study and emg - subsequent appointment arranged for May 2017!! Was also noticing my hands a bit fiddly with money and typing etc that week.
Week 4/5 - on holidays in the sun for 10 days thinking i'd relax but I then started feeling like my voice was slurring a bit, or maybe its a lisp. hard to tell. No one commented apart from one time when I'd had a drink. Was a bit hard to relax when I was hearing this every time I spoke.
I will say that it was definitely becoming more of a challenge to sound like I was speaking normally. In other words my voice sounds different and on the slurry side. Also was noticing fatigue on my arm when drying my daughters hair with hair dryer.
Week 6 (This week) - Both shoulders now feel weak/different, can still lift arms etc. Joints in both hands feeling stiff and sore (especially left) but I'm typing away here with not much difficulty, Just not as precise as I used to be. Last night was difficult to hold phone in left hand which was a first and frightened me.
I'll say that the issues in my left leg have also been ongoing. Mostly cramping in my calf on and off. Ankle feels a bit weak but this could be due to a sports injury I had previously.
Anyways, in general my anxiety levels are off the charts although the valium does help with that a bit. Also feel really tired all the time.
Right now as I sit here my left hand feels stiff, my left ankle and calf are throbbing and my speech is "slurry" nearly all the time. I think people notice but havent said anything. Twitches every now and then also.
I apologise for the long post but wanted to try get everything out there. Any advice would be great as I'll be waiting a while for my EMG!!
Barry