Parkwood7755
New member
- Joined
- Oct 29, 2019
- Messages
- 1
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Dallas
Hi, I am a white male in early 30s. For the past 7 months or so I have had some concerning symptoms and would like your advice.
This started back in April with onset of leg pain in both calves/sometime thighs and twitching. The twitching became widespread over the next few weeks and it is certainly worse on exertion (walking, carrying things, etc). I also began to have shortness of breath, sometime just sitting around and sometimes on exertion. Laying down was sometimes bothersome and felt breathlessness and I needed to use two pillows. I do also have eye floaters that started with all of this and right hand pain where I feel I have lost some muscle, primarily in FDI area.
I have had an extensive workup. MRIs, spinal tap, loads of bloodwork (celiac, autoimmune, MG, lyme, endocrine issues, etc), eye exam, heart/lungs are all ok. Throughout the past 7 months, I had 3 NCS/EMG (one by general neuro, one by Mayo Jax and another by Columbia ALS center). These are clearly not a standard neuro and have experience with ALS patients. All of them were normal, even without fasciculations and they tested legs/arms/tongue/paraspinals/hip/thoracic region.
From all the testing, I do have two abnormal results so far. My MIP was -60 and MEP 60 (Ive found that is 50%-60% of expected). I also had a cardiopulmonary exercise stress test which was abnormal and showed low tidal volumes (at 40% of expected, range 40%-80%) and poor oxygen extraction. I have daily muscle pain, twitching, dyspnea, and floaters. Could this be respiratory or abdominal onset? I had the thoracic region checked by all 3 neuros and EMG there was normal but have clear respiratory weakness. My diaphragm isn't paralyzed as CT with inspiration/expiration normal. PFTs are in the low 80s for FVC/FEV1 while supine only showed a small decrease however these values have been constant since June despite several PFTs and ongoing symptoms.
Thanks for your time and advice.
This started back in April with onset of leg pain in both calves/sometime thighs and twitching. The twitching became widespread over the next few weeks and it is certainly worse on exertion (walking, carrying things, etc). I also began to have shortness of breath, sometime just sitting around and sometimes on exertion. Laying down was sometimes bothersome and felt breathlessness and I needed to use two pillows. I do also have eye floaters that started with all of this and right hand pain where I feel I have lost some muscle, primarily in FDI area.
I have had an extensive workup. MRIs, spinal tap, loads of bloodwork (celiac, autoimmune, MG, lyme, endocrine issues, etc), eye exam, heart/lungs are all ok. Throughout the past 7 months, I had 3 NCS/EMG (one by general neuro, one by Mayo Jax and another by Columbia ALS center). These are clearly not a standard neuro and have experience with ALS patients. All of them were normal, even without fasciculations and they tested legs/arms/tongue/paraspinals/hip/thoracic region.
From all the testing, I do have two abnormal results so far. My MIP was -60 and MEP 60 (Ive found that is 50%-60% of expected). I also had a cardiopulmonary exercise stress test which was abnormal and showed low tidal volumes (at 40% of expected, range 40%-80%) and poor oxygen extraction. I have daily muscle pain, twitching, dyspnea, and floaters. Could this be respiratory or abdominal onset? I had the thoracic region checked by all 3 neuros and EMG there was normal but have clear respiratory weakness. My diaphragm isn't paralyzed as CT with inspiration/expiration normal. PFTs are in the low 80s for FVC/FEV1 while supine only showed a small decrease however these values have been constant since June despite several PFTs and ongoing symptoms.
Thanks for your time and advice.
