pammy621
Member
- Joined
- Mar 16, 2009
- Messages
- 12
- Reason
- CALS
- Diagnosis
- 03/2009
- Country
- US
- State
- New Jersey
- City
- West Orange
I have read several stories here about getting a diagnosis. My husband's issues started a year ago, the first symptom that made him react was pain in his left shoulder, leading to loss of movement in his arm, since then he has muscle weakness, twitching, cramping.
We did not initially notice the extent of the muscle loss until we went to his endocronologist whom he has seen for 16 years, when he saw him without his shirt on he could not believe the muscle loss and was alarmed. We had been seeing a neuro for a year whom ran several mris and blood work everything normal. Cannot explain the pain and loss of use of now both arms. She has done 2 emgs which showed some fibs and facs, she had said she would think possible ALS if not for the pain, she said there is no pain with ALS. She has given him pain meds with no diagnosis. In the mean time he has gotten weaker, his calfs have gotten noticaebly smaller, fatigue and lots of twitching not a lot of cramping. We went to a new Neuro who did more blood work, all normal, he noticed fasics in tongue, he felt ALS was a possible diagnosis, he did an EMG which he said showed some signs that could be ALS. He referred us to a Specialist in NY, the visit was a hassle to get to, he examined my husband for 20 minutes, said he doesn't see fasics, and not sure about weakness because he didn't know him before. When showing him his flabby arms with very little muscle left he said it looks like that was caused by weight loss. (25 lbs in 3 months) We went to their EMG lab were we saw a fellow who did an EMG of Left side only and he said he saw no fasics and some delayed latency other than that normal. The advice of the specialist it to wait and see. However, the when we are home the fasics are crazy in shoulders, arms, legs, face. My husband can get around but is walking very slow and somewhat clumsy. All 3 Drs. mentioned that the pain has is unusual for ALS. My final question is should we go to another Dr. or just wait and see. Any advice would be appreciated
We did not initially notice the extent of the muscle loss until we went to his endocronologist whom he has seen for 16 years, when he saw him without his shirt on he could not believe the muscle loss and was alarmed. We had been seeing a neuro for a year whom ran several mris and blood work everything normal. Cannot explain the pain and loss of use of now both arms. She has done 2 emgs which showed some fibs and facs, she had said she would think possible ALS if not for the pain, she said there is no pain with ALS. She has given him pain meds with no diagnosis. In the mean time he has gotten weaker, his calfs have gotten noticaebly smaller, fatigue and lots of twitching not a lot of cramping. We went to a new Neuro who did more blood work, all normal, he noticed fasics in tongue, he felt ALS was a possible diagnosis, he did an EMG which he said showed some signs that could be ALS. He referred us to a Specialist in NY, the visit was a hassle to get to, he examined my husband for 20 minutes, said he doesn't see fasics, and not sure about weakness because he didn't know him before. When showing him his flabby arms with very little muscle left he said it looks like that was caused by weight loss. (25 lbs in 3 months) We went to their EMG lab were we saw a fellow who did an EMG of Left side only and he said he saw no fasics and some delayed latency other than that normal. The advice of the specialist it to wait and see. However, the when we are home the fasics are crazy in shoulders, arms, legs, face. My husband can get around but is walking very slow and somewhat clumsy. All 3 Drs. mentioned that the pain has is unusual for ALS. My final question is should we go to another Dr. or just wait and see. Any advice would be appreciated