BlueandGold
Senior member
- Joined
- Feb 28, 2015
- Messages
- 634
- Reason
- PALS
- Diagnosis
- 04/2015
- Country
- US
- State
- WV
- City
- Sandyville
Hi folks. May I start by saying how wonderful it is for all the support members of this forum give to those seeking answers. I am a 50 year old male with a wide range of symptoms dating back to April of 2014. My symptoms starting with body-wide twitching; not occasional but constant. I can say however that the twitching was and still is much more aggressive on my left (non dominant side). At the onset of my symptoms I also noticed cramping in my hands but mostly in my left hand. When I would grip something or bend my wrist forward my fingers seemed to draw in toward my palm. My first neurological exam was on May 29th, 2014 with a regular local neurologist. After doing an EMG and NCS on my right side (even though I told him my left side was more affected) I was diagnosed with Cramp Fasciculation Syndrome. The EMG showed fasciculations in all muscles tested but no positive sharp waves. The NCS was normal.
In September of 2014, my Primary Care Doc thought I should get a second opinion and sent me to the Neuromuscular Center at Cleveland Clinic. By this time my left hand had gotten worse and my "pinch" strength was declining along with visible atrophy in the left thenar. After my clinical the only weakness found was in my left thumb and pinky finger. I did have hyperreflexes but they were equal on both sides. I had a very thorough EMG and NCS and the specialist noted fasciculation potentials in 19 of the 22 muscles tested. He noted the following:
1. Reduced recruitment patterns and chronic neurogenic motor unit potentials in the C8-T1 myotomes with no active motor fiber loss.
2. Normal sensory and motor nerve conduction studies
3. Findings were suggestive of an intraspinal canal lesion affecting the C8/T1 myotomes.
4. Chronic motor fiber loss changes in the abductor pollicis brevis and adductor digiti minimi.
5. These findings are insufficient for a diagnosis of widespread disorder of motor fibers like that seen in motor neuron disease.
So an MRI of the cervical spine was ordered but only showed mild to moderate disc bulges and some osteophytes in multiple discs. However, Cleveland Clinic did not pursue any further and advised me to take magnesium and drink tonic water. For one clinical and the EMG/NCS they charged me over $10k.
Fast forward to today...I am now having speech difficulty which has gotten progressively worse since November of 2014. I find that I often have air escaping from my nose when I speak and cannot articulate very well. All of my family has now noticed it. I have no issues with swallowing with either solids or liquids. My main issue is constant phlem in my throat that just will not go away. The weakness in my left hand is still mostly confined to the "pinch" grip. I find it hard to cut the fingernails of my right hand with my left. It is harder to button my jeans with my left hand as well and the thenar is practically gone in my left hand.
I am not going back to Cleveland Clinic as I have a high deductible HSA plan and simply cannot afford their services. I found out that West Virginia University (in my home state of WV) has a neurological center that has been approved by the ALS/MD Society(?) so I am hoping that I can get care cheaper here in my home state. I have an appointment on March 30th.
I guess having given you all this background, one of my questions would be if I am diagnosed with MND, might I have a slower progression since it has been 10 months since onset of symptoms and I still have use of my left hand and it is only weaker? Also, no swallowing problems? I know every PALS is different with their symptoms and progression but I am trying to find something positive. I don't mean to sound like I have already been diagnosed, however having these progressing symptoms for almost a year with all other blood work and MRI's of the brain and cervical area negative, I'm preparing myself for what may come.
Thank you all for any insight.
Vince
In September of 2014, my Primary Care Doc thought I should get a second opinion and sent me to the Neuromuscular Center at Cleveland Clinic. By this time my left hand had gotten worse and my "pinch" strength was declining along with visible atrophy in the left thenar. After my clinical the only weakness found was in my left thumb and pinky finger. I did have hyperreflexes but they were equal on both sides. I had a very thorough EMG and NCS and the specialist noted fasciculation potentials in 19 of the 22 muscles tested. He noted the following:
1. Reduced recruitment patterns and chronic neurogenic motor unit potentials in the C8-T1 myotomes with no active motor fiber loss.
2. Normal sensory and motor nerve conduction studies
3. Findings were suggestive of an intraspinal canal lesion affecting the C8/T1 myotomes.
4. Chronic motor fiber loss changes in the abductor pollicis brevis and adductor digiti minimi.
5. These findings are insufficient for a diagnosis of widespread disorder of motor fibers like that seen in motor neuron disease.
So an MRI of the cervical spine was ordered but only showed mild to moderate disc bulges and some osteophytes in multiple discs. However, Cleveland Clinic did not pursue any further and advised me to take magnesium and drink tonic water. For one clinical and the EMG/NCS they charged me over $10k.
Fast forward to today...I am now having speech difficulty which has gotten progressively worse since November of 2014. I find that I often have air escaping from my nose when I speak and cannot articulate very well. All of my family has now noticed it. I have no issues with swallowing with either solids or liquids. My main issue is constant phlem in my throat that just will not go away. The weakness in my left hand is still mostly confined to the "pinch" grip. I find it hard to cut the fingernails of my right hand with my left. It is harder to button my jeans with my left hand as well and the thenar is practically gone in my left hand.
I am not going back to Cleveland Clinic as I have a high deductible HSA plan and simply cannot afford their services. I found out that West Virginia University (in my home state of WV) has a neurological center that has been approved by the ALS/MD Society(?) so I am hoping that I can get care cheaper here in my home state. I have an appointment on March 30th.
I guess having given you all this background, one of my questions would be if I am diagnosed with MND, might I have a slower progression since it has been 10 months since onset of symptoms and I still have use of my left hand and it is only weaker? Also, no swallowing problems? I know every PALS is different with their symptoms and progression but I am trying to find something positive. I don't mean to sound like I have already been diagnosed, however having these progressing symptoms for almost a year with all other blood work and MRI's of the brain and cervical area negative, I'm preparing myself for what may come.
Thank you all for any insight.
Vince