staugie
Member
- Joined
- Feb 10, 2016
- Messages
- 11
- Reason
- Learn about ALS
- Country
- Us
- State
- New Jersey
- City
- Cedar Knolls
Hi There,
I have to start by saying how wonderful all of you and this site are. Your giving of such important personal information is really amazing and so helpful.
I am scared to go here, but could this be some sort of thoracic onset? I am a 39 year old woman. Does that happen?
My symptoms started with breathing problems in early October. My breathing has gotten progressively worse. Symptoms now also include noticeable atrophy, weakness in my hips/inner thighs/shoulders/upper arms, fasticulations all over and weight loss. Supposedly, though, I have multiple clean EMGS from great hospitals??
A complication... I was diagnosed with Charcot Marie Tooth Disease 1A as a child, but with a mild case. I have been a runner and avid gym-goer since college. However, the doctors swear that is CMT showing up on the EMGs and ALS would show up differently, without a doubt. As far as I know, CMT1A would not progress so fast, nor does it affect the proximal muscles.
Timeline:
- Early October: Hard to take deep breath at times. Chest tightness (intercostals). PFTs show FVCs in the 90s, but significant expiratory muscle weakness. Put on Bi-Pap at night.
- November: Butt muscles gone?? Hurts to sit on padded car seat. Weakness in shoulders and hips... Chalked up to decreased exercise.
- December: Leg fasticulations.
Two EMGs... MGH and Cornell-Weill. MGH thought Myasthenia Gravis, but EMG/blood tests negative. CW confirms. Told anxiety and BFS. *MGH doctor thinks out loud that maybe he should now test for ALS. (Didn't the first EMG do that?) He said it's very doubtful so don't make the trip.*
- January: Fasticulations all over, light cramping. More weakness, including right side of face? Starting to drop weight.
EMG at Columbia. Tech suggests facial weakness evident, but medical fellow later says normal.
- March: Weight down from 135lbs to 120lbs, but eating everything in sight. Constant right shoulder pain and nothing but bone. Inner thighs wasting, first left, then right. Fasticulations in these places. Can't lift weights or walk long distances for fear of inflicting more damage.
Another EMG at Cornell. Told can see sporadic fasticulations on EMG, but that it's normal in 40% of people. Told CMT1A again.
I am at a loss. Can 4 EMGs be wrong??? The last one primarily tested my left leg and arm, but most of the weakness is on my right side. Does that make a difference?
I am getting a colonoscopy on Monday, due to the weight thing and bowel changes. Praying they don't find anything there. I am afraid of the metabolic changes that happen with ALS, of course... but the EMGs?
(For the record, I have been tested for all of the major auto-immune diseases and vitamin deficiencies. My brain MRI showed only a slight pituitary abnormality, but not concerning. CBC panels almost all normal (slight anemia), as is CK level. I've had normal chest and abdominal CTs. I turned down a lumbar puncture due to more radiation and the doctor said it seemed a stretch anyway.)
Thank you for reading (sorry it's so long) and any thoughts would be awesome.
Cari
More strangeness... I also have had autonomic symptoms... Double/blurry vision, dry eyes/mouth, bowel changes.
I have to start by saying how wonderful all of you and this site are. Your giving of such important personal information is really amazing and so helpful.
I am scared to go here, but could this be some sort of thoracic onset? I am a 39 year old woman. Does that happen?
My symptoms started with breathing problems in early October. My breathing has gotten progressively worse. Symptoms now also include noticeable atrophy, weakness in my hips/inner thighs/shoulders/upper arms, fasticulations all over and weight loss. Supposedly, though, I have multiple clean EMGS from great hospitals??
A complication... I was diagnosed with Charcot Marie Tooth Disease 1A as a child, but with a mild case. I have been a runner and avid gym-goer since college. However, the doctors swear that is CMT showing up on the EMGs and ALS would show up differently, without a doubt. As far as I know, CMT1A would not progress so fast, nor does it affect the proximal muscles.
Timeline:
- Early October: Hard to take deep breath at times. Chest tightness (intercostals). PFTs show FVCs in the 90s, but significant expiratory muscle weakness. Put on Bi-Pap at night.
- November: Butt muscles gone?? Hurts to sit on padded car seat. Weakness in shoulders and hips... Chalked up to decreased exercise.
- December: Leg fasticulations.
Two EMGs... MGH and Cornell-Weill. MGH thought Myasthenia Gravis, but EMG/blood tests negative. CW confirms. Told anxiety and BFS. *MGH doctor thinks out loud that maybe he should now test for ALS. (Didn't the first EMG do that?) He said it's very doubtful so don't make the trip.*
- January: Fasticulations all over, light cramping. More weakness, including right side of face? Starting to drop weight.
EMG at Columbia. Tech suggests facial weakness evident, but medical fellow later says normal.
- March: Weight down from 135lbs to 120lbs, but eating everything in sight. Constant right shoulder pain and nothing but bone. Inner thighs wasting, first left, then right. Fasticulations in these places. Can't lift weights or walk long distances for fear of inflicting more damage.
Another EMG at Cornell. Told can see sporadic fasticulations on EMG, but that it's normal in 40% of people. Told CMT1A again.
I am at a loss. Can 4 EMGs be wrong??? The last one primarily tested my left leg and arm, but most of the weakness is on my right side. Does that make a difference?
I am getting a colonoscopy on Monday, due to the weight thing and bowel changes. Praying they don't find anything there. I am afraid of the metabolic changes that happen with ALS, of course... but the EMGs?
(For the record, I have been tested for all of the major auto-immune diseases and vitamin deficiencies. My brain MRI showed only a slight pituitary abnormality, but not concerning. CBC panels almost all normal (slight anemia), as is CK level. I've had normal chest and abdominal CTs. I turned down a lumbar puncture due to more radiation and the doctor said it seemed a stretch anyway.)
Thank you for reading (sorry it's so long) and any thoughts would be awesome.
Cari
More strangeness... I also have had autonomic symptoms... Double/blurry vision, dry eyes/mouth, bowel changes.