spbalazs
Member
- Joined
- Nov 17, 2020
- Messages
- 19
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- LN
- City
- London
Hello All,
I am 32M. I was diagnosed with BFS over 1.5 year ago.
I am looked after by an ALS specialist and I had 4 EMGs carried out, all were normal except fasciculations. Reflexes are brisk, but "not pathological. "
The ALS specialist is not worried, but the raised CK is "bugging him" and he wants me to come back in 3 months again and do the test again.
It all started with body-wise fasciculations and difficulty breathing, and perceived left leg weakness.
Today I am unable to take a normal breath in if I lean forward or stay in the water to swim, and also I find it difficult to breath whilst laying on my back.
I developed a strange gait, and my friends said I walk like a "penguin".
I have core weakness, and despite regular excercise, I went from being able to do a 100 sit ups in a year, to 5-10.
I also developed minor bladder issues, where I find spots of urine on my pants all the time, even though I make sure everything is cleaned before putting things away.
I had many-many MRIs, CT, countless blood tests, everything is fine, except CK which is between 440-1000, even after 10 days rest, as well as equivocal AcHR blood test 0.63. MG ruled out via SFEMG.
I have upcoming test with a pulmonologist who said I either have paralysed diaphragm or a breathing disorder, with the latter being more likely.
Couple of questions:
-Could ALS start in the core muscle and breathing muscles?
-Could ALS affect the bladder in the early phase?
-I never had a spinal tap. Is it something worth asking for?
Thank you for your time.
I am 32M. I was diagnosed with BFS over 1.5 year ago.
I am looked after by an ALS specialist and I had 4 EMGs carried out, all were normal except fasciculations. Reflexes are brisk, but "not pathological. "
The ALS specialist is not worried, but the raised CK is "bugging him" and he wants me to come back in 3 months again and do the test again.
It all started with body-wise fasciculations and difficulty breathing, and perceived left leg weakness.
Today I am unable to take a normal breath in if I lean forward or stay in the water to swim, and also I find it difficult to breath whilst laying on my back.
I developed a strange gait, and my friends said I walk like a "penguin".
I have core weakness, and despite regular excercise, I went from being able to do a 100 sit ups in a year, to 5-10.
I also developed minor bladder issues, where I find spots of urine on my pants all the time, even though I make sure everything is cleaned before putting things away.
I had many-many MRIs, CT, countless blood tests, everything is fine, except CK which is between 440-1000, even after 10 days rest, as well as equivocal AcHR blood test 0.63. MG ruled out via SFEMG.
I have upcoming test with a pulmonologist who said I either have paralysed diaphragm or a breathing disorder, with the latter being more likely.
Couple of questions:
-Could ALS start in the core muscle and breathing muscles?
-Could ALS affect the bladder in the early phase?
-I never had a spinal tap. Is it something worth asking for?
Thank you for your time.