cperson
New member
- Joined
- Jan 13, 2019
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- OH
- City
- Cincinnati
I promised myself I wouldn't post here, but I caved to my stress over these symptoms.
42 year old Male. Initially I noticed a fine tremor in my left hand and feeling of internal tremor and starting having concerns over Parkinson's. In early November I started developing twitches in my legs. They came fast and furious, primarily in both calves but up and down the legs. I was in a period of major stress. I needed an MRI for unexplained headaches which came back clean. My sleep has been not great for over 2 months. With melatonin I fall asleep now, but wake up 3-4 times. I was more concerned about the tremors (didn't even think about ALS at the time) and knew I should see a MD.
Saw a neurologist (who I found out later, unfortunately, was a migraine specialist). He did the usual clinical exam, all good. Didn't see evidence of MND but in his report said he saw no tremors or fasciculations. This bothered me so in my follow up I brought video and and showed him the tremors/twitches. The appointment felt rushed and he told me to cut out caffeine and drink lots of water. This did nothing for me BTW. He also gave me a referral to a specialist 3 hours away if I wanted to pursue it. He suggested a wait and see approach.
I'm thinking I should see another neurologist. The fasciculations are not going away. I feel them most obviously laying in bed at night or in the morning. They are very noticeable to the eye. I get occasional twitches in my arm or forearm as well, nothing like my legs though.
Most concerning now is over 6 weeks month of dull aches in my legs and thighs. I know pain points away from MND, so I haven't put too much stock into it. However over the past 2 weeks, I have been developing cramp like feelings (not a full charlie horse) in my hands and both feet. Occasionally I get the same feeling in a calf. I have a burning type muscle pain in the top of my forearm (near my elbow) but I know is not related. I have about 7lbs of unplanned weight loss over the last 6 months. I haven't exercised in the last 2 months.
I have read the stickies, but also when searching, there are PALS here who clearly had fasciculations and cramps at the beginning with no other symptoms. My takeaway is that it happens but is rare, but apparently not rare enough since there is evidence on these forums and case studies online.
Am I crazy for going to get a 2nd opinion? The non stop twitches with bilateral foot and hand cramp tendencies has raised my concern level very high. I don't want to go down the EMG path - I see people here who have had 4 or 5 EMGs! I don't want to get stuck in that cycle, but when a simple google result for als turns up fasciculations and cramps, I can't convince myself I am worrying over nothing.
Thank you for taking the time to listen.
42 year old Male. Initially I noticed a fine tremor in my left hand and feeling of internal tremor and starting having concerns over Parkinson's. In early November I started developing twitches in my legs. They came fast and furious, primarily in both calves but up and down the legs. I was in a period of major stress. I needed an MRI for unexplained headaches which came back clean. My sleep has been not great for over 2 months. With melatonin I fall asleep now, but wake up 3-4 times. I was more concerned about the tremors (didn't even think about ALS at the time) and knew I should see a MD.
Saw a neurologist (who I found out later, unfortunately, was a migraine specialist). He did the usual clinical exam, all good. Didn't see evidence of MND but in his report said he saw no tremors or fasciculations. This bothered me so in my follow up I brought video and and showed him the tremors/twitches. The appointment felt rushed and he told me to cut out caffeine and drink lots of water. This did nothing for me BTW. He also gave me a referral to a specialist 3 hours away if I wanted to pursue it. He suggested a wait and see approach.
I'm thinking I should see another neurologist. The fasciculations are not going away. I feel them most obviously laying in bed at night or in the morning. They are very noticeable to the eye. I get occasional twitches in my arm or forearm as well, nothing like my legs though.
Most concerning now is over 6 weeks month of dull aches in my legs and thighs. I know pain points away from MND, so I haven't put too much stock into it. However over the past 2 weeks, I have been developing cramp like feelings (not a full charlie horse) in my hands and both feet. Occasionally I get the same feeling in a calf. I have a burning type muscle pain in the top of my forearm (near my elbow) but I know is not related. I have about 7lbs of unplanned weight loss over the last 6 months. I haven't exercised in the last 2 months.
I have read the stickies, but also when searching, there are PALS here who clearly had fasciculations and cramps at the beginning with no other symptoms. My takeaway is that it happens but is rare, but apparently not rare enough since there is evidence on these forums and case studies online.
Am I crazy for going to get a 2nd opinion? The non stop twitches with bilateral foot and hand cramp tendencies has raised my concern level very high. I don't want to go down the EMG path - I see people here who have had 4 or 5 EMGs! I don't want to get stuck in that cycle, but when a simple google result for als turns up fasciculations and cramps, I can't convince myself I am worrying over nothing.
Thank you for taking the time to listen.