Hello All-
I’ve waited as long as possible before posting to these forums (I’ve been reading them for some time) for fear of somehow insulting/disrespecting the plight of those brave persons living with this disease with my (perhaps) unreasonable concerns. After reading this site on a fairly regular basis since November, I now feel comfortable that even if my fears prove ill founded, the kind and generous among you will take some time thinking about my history. My story is fairly long, so thanks in advance for reading.
I’m a 38 year old married male living in Boston. I have no children, though my wife and I finally started considering the possibility just before my initial injury.
On August 23, 2011, while stepping off of a street curb, I tore my right gastrocenemius (calf muscle). At the time, I had recently quit smoking (after 20 yrs of a pack per day). I had also experienced some soreness in my right calf after two consecutive weekends of strenuous hiking and climbing. Although not in miserable shape (I typically walked around 2 miles per day in the course of subway commuting to and from work), I didn’t work out with any regularity. The treating physician at the MGH ER informed me of the tear, handed me some crutches and told me to put weight on it as possible…I should be fine in a few weeks.
2 weeks later, my injury hadn’t improved. At this point, I visited an MGH physiatrist, who promptly informed me that I hadn’t torn my right gastroc, but rather my right plantaris – a vestigial muscle. He suggested that I try to aggressively bear weight on that leg, let it swell and then enjoy a very quick recovery. In the meantime, he suggested that I start PT.
My physical therapist informed me that the physiatrist had mistakenly disagreed with the ER – that I had suffered a strain or tear of the medial head of my right gastrocenemius. He also suspected that, in the course of ‘aggressively bearing weight’ on that leg, I had reinjured it. No matter, he could help. I subsequently returned to the physiatrist and requested and received an MRI of my right calf – which MRI confirmed my PT’s diagnosis. ~6 weeks passed, during which time I spent 2 weeks of previously scheduled vacation in bed (my PT suggested that I not walk unnecessarily). At the end of that 6 week period, I finally began to walk unaided. The first day that I did so, my PT judged my walk to be ataxic. He also suggested that my recovery had taken far too much time and that my legs manifested extreme weakness (I couldn’t perform single leg calf raises, couldn’t balance on one leg for 15 seconds). He suggested that I consult a neurologist on suspicion of MS. I protested that my injury had way-laid me and that I had smoked heavily until recently. He insisted. My reaction was “are you f***ing kidding? MS? You’re nuts”. Around this time, I also developed some buckling in the left knee (ie the knee in the ‘good’ leg). The buckling dissipated after a week or so, but the knee continued to persistently hurt or felt internally ‘pressured’.
I decided to see a neurologist at Beth Israel Deaconess, just in case. I managed to call on a Friday and schedule an appointment with an MS specialist for the following Monday morning. The MS specialist performed a 45 min neurological examination that revealed some weakness in the right calf (injured) and left hip. He also found 7 beats of clonus in my left ankle and 3 beats in my right. He also noted some gait abnormality (I had trouble with tandem walk). He suggested that we could easily explain the gait abnormality and the weakness in both the right calf and the left hip by appeal to the injury. The clonus, however, seemed unusual. He ordered head and c-spine MRIs, with and without contrast. He could tell that I was freaked.
I got lucky and managed to schedule the MRIs for that evening. He called me the next morning to report that he had reviewed them and found a disc herniation at c5-6 and c-6-7, one of which impinged the spine. The rest of the MRI came back clean. He considered this good news, since the herniation likely explained the clonus. The radiologist, however, disagreed with the neurologist’s assessment, finding the herniation too mild to explain the clonus. Here’s an excerpt from the report:
“C5-C6: There is a disc protrusion which begins centrally and progresses laterally to flatten the right anterior aspect of the spinal cord extending into the neural foramen, resulting in mild neural foraminal stenosis and mild spinal stenosis. C6-C7: There is a disc protrusion which begins centrally and progresses laterally to flatten the left anterior aspect of the spinal cord with extention into the left neural foramen, resulting in mild neural foraminal stenosis. Bilateral uncovertebral osteophytes are seen invading their respective foramina.”
Before hearing of the radiologist’s view, I had recounted the neurologist’s optimistic findings to my PT, who responded that he didn’t believe that a herniation could explain the extent and pervasiveness of my weakness. The PT now explained that he had found that both of my hips, thighs and calves were weak. At that point, I asked him what he suspected (since the MRI had largely ruled out MS). He seemed evasive, so I asked him whether he suspected ALS. He responded that he couldn’t diagnose ALS, but that I should specifically ask my neurologist about the possibility. So I did.
After receiving the news regarding the radiologist’s view, the neurologist suggested that an EMG might make sense, given that my PT had raised the possibility. Again, I lucked out and managed to schedule the EMG for that day (early November 2011). A different neurologist, who specializes in neuro muscular disease, administered an office examination before performing needle myelography (someone else administered the shock portion) on both calves (and possibly both quads, though I don’t recall), my right arm, one paraspinal and the right genioglossus. She seemed great. She informed me that I didn’t have ALS by the end of the test. Rather, she identified pinched nerves or some sort of spinal arthritis – nothing major. Results below:
“He has 2+ reflexes in the UE, 3+ at knees, 2+ at ankles with ill sustained ankle clonus bilaterally…
Concentric needle electromyography of selected muscles of the right lower extremity representing the L2-S1 myotomes revealed mild chronic reinnervation in the tibialis anterior, tibialis posterior and biceps femoris long head, and moderate chronic reinnervation with complex repetitive discharges in the medial gastrocnemius. The vastus lateralis was normal.
Concentric needle electromyography of selected muscles of the left lower extremity representing the L2-S1 myotomes revealed mild chronic reinnervation in the medial gastrocnemius. All other muscles tested were normal.
Concentric needle electromyography of selected muscles of the right upper extremity representing the C5-T1 myotomes was normal.
Concentric needle electromyography of the right genioglossus was normal.
Concentric needle electromyography of the right mid thoracic paraspinal muscles was normal.
Clinical Interpretation: Abnormal study. There is electrophysiologic evidence for a moderate chronic right S1 radiculopathy and a mild chronic right L5 radiculopathy. A mild chronic left S1 radiculopathy cannot be excluded. There is no evidence for a generalized disorder of motor neurons or their axons as in amyotrophic lateral sclerosis.”
I felt relieved, at this point. Very relieved and grateful.
The clonus, however, remained unresolved. Around this time, I visited an orthopaedist about my buckling knee. After an examination, he informed me that my knee buckling resulted from a severely deconditioned left quad, probably resulting from disuse while on crutches. He also diagnosed me with patella femoral syndrome. He recommended a new PT for strengthening. He also found that I failed the tandem walk, suffered ankle clonus, hyper reflexive knees and positive babinski (although he cautioned that he would defer to a neurologist on these findings). After looking at my neck MRI, he pronounced probable cervical myelopathy and referred me to a spinal surgeon.
A few days later, I met with the spinal surgeon and had coincidentally scheduled a follow-up with my first neurologist on that day. The neurologist stated that the EMG ruled out ALS and a variety of other neuro muscular disorders. As such, he believed that the herniation explained the clonus. He found no difficulty with tandem walk that day. He spent 5 minutes trying to elicit babinski, but failed. He noted some hyper reflexia in my knees, but didn’t seem moved. I had also requested an MRI of my L and T spines to confirm the EMG findings. Those findings kinda supported the EMG administering neurologist’s findings:
“At L4-5: Mild bulge with bilateral facet degenerative changes. No significant canal or foraminal stenosis.At L5-S1: Disc desiccation, mild bulge abutting the L5 and S1 nerves without significant deformity on the nerves. Bilateral facet degenerative changes are noted. There is a small focal posterior central annular tear. The spinal cord ends at L1 level. The nerves of the thecal sac are normal. The spinal canal may be slightly narrowed diffusely which may be developmental/subjective in interpretation. No pre- or para-vertebral soft tissue swelling or masses are noted.
IMPRESSION:1. Multilevel, multifactorial degenerative changes in the cervical spine, better assessed on the prior study. In particular, at C6-C7 level, there is some degree of canal stenosis with deformity on the cord. Please see the prior MR C spine study.2. At T2-T3: Minimal-to-mild bulge indenting the thecal sac.3. At L4-5 and L5-S1 levels: Mild bulge with bilateral facet degenerative changes. The disc bulge at L5-S1 level is seen to abut the L5 and S1 nerves.”
“Abut” but not pinch.
That afternoon, I met with the spinal surgeon, who indicated that he did not believe that my herniation explained my clonus. He also performed an examination, finding 3 beats of clonus, positive rhomberg (? No one had found that before or since…in fact, I’ve been told that I have remarkably good proprioception) and mild steppage gait. He too acknowledged that the steppage gait might result from my initial leg injury or the injury to my left knee (knee on the good leg). He also noted that my strength had apparently improved since the time that I left PT (could balance on one leg for 30+ seconds, stand on tip toes, but couldn’t perform a single leg calf raise). He noted that, based on the water content in the herniated disc, the herniation seemed recent. At that point, I recalled that I had fallen, while moving on September 1, flat on my face, while using crutches. He did not encourage surgery on the theory that (1) he only gave the hernia a 50% chance of explaining my clonus and (2) my ‘symptoms’ didn’t merit surgical intervention, especially if I continued to improve. On the one hand, great news. On the other, it left a mystery unsolved…ankle clonus.
At this point, Thanksgiving would arrive within a few weeks. I figured that I should trust my doctors and try to move on. I started a new job (leaving my job of 7+ years) on the Monday after Thanksgiving. My recollection grows fuzzy. At some point before Thanksgiving, I experienced some fecal incontinence and called my PCP. He saw me and noted that he found ‘maybe 1 beat of clonus bilaterally’. He found my walk ataxic. I also noted for him a strange sensation in my right foot while climbing stairs – I would feel as though my foot was slipping a little.
I began seeing a new PT (per the recommendation of the Ortho that examined my knee), which went well. Around Christmas time, however, I experienced a bone spur on the left side of my mouth. Let me explain. Back in September, I had had both wisdom teeth on the left side removed. At the time of extraction, the dentist advised that I might experience ‘tooth spurs’ rising up through my gums around the site of the extraction. I experienced one spur in the immediate aftermath of the extraction that required 2 weeks to finally evacuate. A second spur appeared 2 weeks before Christmas and resolved 2 days before Christmas. On Christmas, I started biting my tongue while speaking. Mostly on the left side around the space vacated by the tooth extraction – but the biting didn’t begin until 3 months after the extraction. At this point I googled ‘biting tongue while speaking’ and found myself back here. This, coupled with the unresolved question concerning clonus, scared me. At some point, I also found reference to a study in which 21% of PALS indicated that they had initially been misdiagnosed with pinched nerves. I also started having diffuse twitching throughout my body around this time, though concentrated in the calves.
At this point, I made two appointments, one with the ALS clinic at MGH and another with the ALS clinic at Beth Israel Deaconess. Unfortunately, I had to wait a few weeks for the MGH appointment and another week for the appointment at BIDMC. Keenly aware of the toll that this had taken on my wonderful, loving wife, I agreed to begin taking Celexa to help with my anxiety while waiting for the appointments. I began Celexa at 10 mgs for 3 days, before increasing to 20 mgs. The 10mg days included mild nausea and a mildly strange feeling in my throat (like a mild desire to regurgitate, even though I hadn’t eaten anything). On the day that I increased to 20mgs, I developed a lump in my throat. My PCP (who, though very supportive and helpful…as have been all of the doctors that I’ve worked with…probably thinks I’m crazy by now) suggested that it may be GERD or nerves.
At the MGH appointment, I explained my story to a neuromuscular disease fellow who put me through a long office examination. In addition to the standard strength/reflex testing, she made me get out of a chair on one leg, jump from a crouched position to touch the ceiling (I’m 6 feet tall) and support all of her upperbody strength on one foot while standing on my heels. She found brisk reflexes. She indicated that she had never heard of biting a tongue while speaking as a symptom of ALS and indicated that if the lump didn’t interfere with swallowing, I shouldn’t worry about it. Later, the ALS specialized neurologist came in, tested my reflexes and some strength and declared that my reflexes were brisk but not pathologically so. He pulled two beats of clonus. I asked him about UMN variants of ALS. He acknowledged them but insisted that I didn’t have MND. He didn’t order any further tests and told me to come back in a year, if I wanted. Both the fellow and the specialist found full strength throughout my legs.
At the BIDMC appointment, a neurology fellow seeking to specialize in neuromuscular disease performed a customary neurological examination and pulled no beats of clonus. When the ALS specialist neurologist examined me, she also found nothing abnormal to suggest ALS or any other neurological disorder. She dismissed my concerns regarding possible misdiagnosis of pinched nerves by pointing out that my EMG didn’t reveal any ‘active denervation’. I had already learned to distinguish my EMG results on that basis by reading one of Wright’s many posts. She indicated that I should return in 6 months, to follow up. Both the fellow and the ALS specialist found full strength throughout my legs.
As of today, I still have pain in my left knee…it tends to appear if I don’t exercise for a couple of days. I don’t worry too much about the legs since the EMG should have found something.
The symptoms that trouble me are a general feeling of lack of coordination in my mouth – as evidenced by biting my tongue while speaking and sometimes feeling generally tongue tied when speaking. Nobody else has noticed slurring, though I feel as though I notice it…the slurring seems to come and go. The biting has gotten me to the point where I get nervous every time I know that I will need to speak. I also worry about the lump in my throat. I started taking Prilosec while taking Celexa to see if that would reduce the lump sensation. It may have…reducing the lump from a 10 to a 7, perhaps. It’s tough to say since I also reduced the Celexa from 20 mgs to 10mgs around the same time. So, lump in throat plus lack of motor coordination in my mouth.
Apologies in advance if I seem like a paranoid jerk for wasting your time. Please let me know your thoughts.
I’ve omitted some details so feel free to ask questions.
I’ve waited as long as possible before posting to these forums (I’ve been reading them for some time) for fear of somehow insulting/disrespecting the plight of those brave persons living with this disease with my (perhaps) unreasonable concerns. After reading this site on a fairly regular basis since November, I now feel comfortable that even if my fears prove ill founded, the kind and generous among you will take some time thinking about my history. My story is fairly long, so thanks in advance for reading.
I’m a 38 year old married male living in Boston. I have no children, though my wife and I finally started considering the possibility just before my initial injury.
On August 23, 2011, while stepping off of a street curb, I tore my right gastrocenemius (calf muscle). At the time, I had recently quit smoking (after 20 yrs of a pack per day). I had also experienced some soreness in my right calf after two consecutive weekends of strenuous hiking and climbing. Although not in miserable shape (I typically walked around 2 miles per day in the course of subway commuting to and from work), I didn’t work out with any regularity. The treating physician at the MGH ER informed me of the tear, handed me some crutches and told me to put weight on it as possible…I should be fine in a few weeks.
2 weeks later, my injury hadn’t improved. At this point, I visited an MGH physiatrist, who promptly informed me that I hadn’t torn my right gastroc, but rather my right plantaris – a vestigial muscle. He suggested that I try to aggressively bear weight on that leg, let it swell and then enjoy a very quick recovery. In the meantime, he suggested that I start PT.
My physical therapist informed me that the physiatrist had mistakenly disagreed with the ER – that I had suffered a strain or tear of the medial head of my right gastrocenemius. He also suspected that, in the course of ‘aggressively bearing weight’ on that leg, I had reinjured it. No matter, he could help. I subsequently returned to the physiatrist and requested and received an MRI of my right calf – which MRI confirmed my PT’s diagnosis. ~6 weeks passed, during which time I spent 2 weeks of previously scheduled vacation in bed (my PT suggested that I not walk unnecessarily). At the end of that 6 week period, I finally began to walk unaided. The first day that I did so, my PT judged my walk to be ataxic. He also suggested that my recovery had taken far too much time and that my legs manifested extreme weakness (I couldn’t perform single leg calf raises, couldn’t balance on one leg for 15 seconds). He suggested that I consult a neurologist on suspicion of MS. I protested that my injury had way-laid me and that I had smoked heavily until recently. He insisted. My reaction was “are you f***ing kidding? MS? You’re nuts”. Around this time, I also developed some buckling in the left knee (ie the knee in the ‘good’ leg). The buckling dissipated after a week or so, but the knee continued to persistently hurt or felt internally ‘pressured’.
I decided to see a neurologist at Beth Israel Deaconess, just in case. I managed to call on a Friday and schedule an appointment with an MS specialist for the following Monday morning. The MS specialist performed a 45 min neurological examination that revealed some weakness in the right calf (injured) and left hip. He also found 7 beats of clonus in my left ankle and 3 beats in my right. He also noted some gait abnormality (I had trouble with tandem walk). He suggested that we could easily explain the gait abnormality and the weakness in both the right calf and the left hip by appeal to the injury. The clonus, however, seemed unusual. He ordered head and c-spine MRIs, with and without contrast. He could tell that I was freaked.
I got lucky and managed to schedule the MRIs for that evening. He called me the next morning to report that he had reviewed them and found a disc herniation at c5-6 and c-6-7, one of which impinged the spine. The rest of the MRI came back clean. He considered this good news, since the herniation likely explained the clonus. The radiologist, however, disagreed with the neurologist’s assessment, finding the herniation too mild to explain the clonus. Here’s an excerpt from the report:
“C5-C6: There is a disc protrusion which begins centrally and progresses laterally to flatten the right anterior aspect of the spinal cord extending into the neural foramen, resulting in mild neural foraminal stenosis and mild spinal stenosis. C6-C7: There is a disc protrusion which begins centrally and progresses laterally to flatten the left anterior aspect of the spinal cord with extention into the left neural foramen, resulting in mild neural foraminal stenosis. Bilateral uncovertebral osteophytes are seen invading their respective foramina.”
Before hearing of the radiologist’s view, I had recounted the neurologist’s optimistic findings to my PT, who responded that he didn’t believe that a herniation could explain the extent and pervasiveness of my weakness. The PT now explained that he had found that both of my hips, thighs and calves were weak. At that point, I asked him what he suspected (since the MRI had largely ruled out MS). He seemed evasive, so I asked him whether he suspected ALS. He responded that he couldn’t diagnose ALS, but that I should specifically ask my neurologist about the possibility. So I did.
After receiving the news regarding the radiologist’s view, the neurologist suggested that an EMG might make sense, given that my PT had raised the possibility. Again, I lucked out and managed to schedule the EMG for that day (early November 2011). A different neurologist, who specializes in neuro muscular disease, administered an office examination before performing needle myelography (someone else administered the shock portion) on both calves (and possibly both quads, though I don’t recall), my right arm, one paraspinal and the right genioglossus. She seemed great. She informed me that I didn’t have ALS by the end of the test. Rather, she identified pinched nerves or some sort of spinal arthritis – nothing major. Results below:
“He has 2+ reflexes in the UE, 3+ at knees, 2+ at ankles with ill sustained ankle clonus bilaterally…
Concentric needle electromyography of selected muscles of the right lower extremity representing the L2-S1 myotomes revealed mild chronic reinnervation in the tibialis anterior, tibialis posterior and biceps femoris long head, and moderate chronic reinnervation with complex repetitive discharges in the medial gastrocnemius. The vastus lateralis was normal.
Concentric needle electromyography of selected muscles of the left lower extremity representing the L2-S1 myotomes revealed mild chronic reinnervation in the medial gastrocnemius. All other muscles tested were normal.
Concentric needle electromyography of selected muscles of the right upper extremity representing the C5-T1 myotomes was normal.
Concentric needle electromyography of the right genioglossus was normal.
Concentric needle electromyography of the right mid thoracic paraspinal muscles was normal.
Clinical Interpretation: Abnormal study. There is electrophysiologic evidence for a moderate chronic right S1 radiculopathy and a mild chronic right L5 radiculopathy. A mild chronic left S1 radiculopathy cannot be excluded. There is no evidence for a generalized disorder of motor neurons or their axons as in amyotrophic lateral sclerosis.”
I felt relieved, at this point. Very relieved and grateful.
The clonus, however, remained unresolved. Around this time, I visited an orthopaedist about my buckling knee. After an examination, he informed me that my knee buckling resulted from a severely deconditioned left quad, probably resulting from disuse while on crutches. He also diagnosed me with patella femoral syndrome. He recommended a new PT for strengthening. He also found that I failed the tandem walk, suffered ankle clonus, hyper reflexive knees and positive babinski (although he cautioned that he would defer to a neurologist on these findings). After looking at my neck MRI, he pronounced probable cervical myelopathy and referred me to a spinal surgeon.
A few days later, I met with the spinal surgeon and had coincidentally scheduled a follow-up with my first neurologist on that day. The neurologist stated that the EMG ruled out ALS and a variety of other neuro muscular disorders. As such, he believed that the herniation explained the clonus. He found no difficulty with tandem walk that day. He spent 5 minutes trying to elicit babinski, but failed. He noted some hyper reflexia in my knees, but didn’t seem moved. I had also requested an MRI of my L and T spines to confirm the EMG findings. Those findings kinda supported the EMG administering neurologist’s findings:
“At L4-5: Mild bulge with bilateral facet degenerative changes. No significant canal or foraminal stenosis.At L5-S1: Disc desiccation, mild bulge abutting the L5 and S1 nerves without significant deformity on the nerves. Bilateral facet degenerative changes are noted. There is a small focal posterior central annular tear. The spinal cord ends at L1 level. The nerves of the thecal sac are normal. The spinal canal may be slightly narrowed diffusely which may be developmental/subjective in interpretation. No pre- or para-vertebral soft tissue swelling or masses are noted.
IMPRESSION:1. Multilevel, multifactorial degenerative changes in the cervical spine, better assessed on the prior study. In particular, at C6-C7 level, there is some degree of canal stenosis with deformity on the cord. Please see the prior MR C spine study.2. At T2-T3: Minimal-to-mild bulge indenting the thecal sac.3. At L4-5 and L5-S1 levels: Mild bulge with bilateral facet degenerative changes. The disc bulge at L5-S1 level is seen to abut the L5 and S1 nerves.”
“Abut” but not pinch.
That afternoon, I met with the spinal surgeon, who indicated that he did not believe that my herniation explained my clonus. He also performed an examination, finding 3 beats of clonus, positive rhomberg (? No one had found that before or since…in fact, I’ve been told that I have remarkably good proprioception) and mild steppage gait. He too acknowledged that the steppage gait might result from my initial leg injury or the injury to my left knee (knee on the good leg). He also noted that my strength had apparently improved since the time that I left PT (could balance on one leg for 30+ seconds, stand on tip toes, but couldn’t perform a single leg calf raise). He noted that, based on the water content in the herniated disc, the herniation seemed recent. At that point, I recalled that I had fallen, while moving on September 1, flat on my face, while using crutches. He did not encourage surgery on the theory that (1) he only gave the hernia a 50% chance of explaining my clonus and (2) my ‘symptoms’ didn’t merit surgical intervention, especially if I continued to improve. On the one hand, great news. On the other, it left a mystery unsolved…ankle clonus.
At this point, Thanksgiving would arrive within a few weeks. I figured that I should trust my doctors and try to move on. I started a new job (leaving my job of 7+ years) on the Monday after Thanksgiving. My recollection grows fuzzy. At some point before Thanksgiving, I experienced some fecal incontinence and called my PCP. He saw me and noted that he found ‘maybe 1 beat of clonus bilaterally’. He found my walk ataxic. I also noted for him a strange sensation in my right foot while climbing stairs – I would feel as though my foot was slipping a little.
I began seeing a new PT (per the recommendation of the Ortho that examined my knee), which went well. Around Christmas time, however, I experienced a bone spur on the left side of my mouth. Let me explain. Back in September, I had had both wisdom teeth on the left side removed. At the time of extraction, the dentist advised that I might experience ‘tooth spurs’ rising up through my gums around the site of the extraction. I experienced one spur in the immediate aftermath of the extraction that required 2 weeks to finally evacuate. A second spur appeared 2 weeks before Christmas and resolved 2 days before Christmas. On Christmas, I started biting my tongue while speaking. Mostly on the left side around the space vacated by the tooth extraction – but the biting didn’t begin until 3 months after the extraction. At this point I googled ‘biting tongue while speaking’ and found myself back here. This, coupled with the unresolved question concerning clonus, scared me. At some point, I also found reference to a study in which 21% of PALS indicated that they had initially been misdiagnosed with pinched nerves. I also started having diffuse twitching throughout my body around this time, though concentrated in the calves.
At this point, I made two appointments, one with the ALS clinic at MGH and another with the ALS clinic at Beth Israel Deaconess. Unfortunately, I had to wait a few weeks for the MGH appointment and another week for the appointment at BIDMC. Keenly aware of the toll that this had taken on my wonderful, loving wife, I agreed to begin taking Celexa to help with my anxiety while waiting for the appointments. I began Celexa at 10 mgs for 3 days, before increasing to 20 mgs. The 10mg days included mild nausea and a mildly strange feeling in my throat (like a mild desire to regurgitate, even though I hadn’t eaten anything). On the day that I increased to 20mgs, I developed a lump in my throat. My PCP (who, though very supportive and helpful…as have been all of the doctors that I’ve worked with…probably thinks I’m crazy by now) suggested that it may be GERD or nerves.
At the MGH appointment, I explained my story to a neuromuscular disease fellow who put me through a long office examination. In addition to the standard strength/reflex testing, she made me get out of a chair on one leg, jump from a crouched position to touch the ceiling (I’m 6 feet tall) and support all of her upperbody strength on one foot while standing on my heels. She found brisk reflexes. She indicated that she had never heard of biting a tongue while speaking as a symptom of ALS and indicated that if the lump didn’t interfere with swallowing, I shouldn’t worry about it. Later, the ALS specialized neurologist came in, tested my reflexes and some strength and declared that my reflexes were brisk but not pathologically so. He pulled two beats of clonus. I asked him about UMN variants of ALS. He acknowledged them but insisted that I didn’t have MND. He didn’t order any further tests and told me to come back in a year, if I wanted. Both the fellow and the specialist found full strength throughout my legs.
At the BIDMC appointment, a neurology fellow seeking to specialize in neuromuscular disease performed a customary neurological examination and pulled no beats of clonus. When the ALS specialist neurologist examined me, she also found nothing abnormal to suggest ALS or any other neurological disorder. She dismissed my concerns regarding possible misdiagnosis of pinched nerves by pointing out that my EMG didn’t reveal any ‘active denervation’. I had already learned to distinguish my EMG results on that basis by reading one of Wright’s many posts. She indicated that I should return in 6 months, to follow up. Both the fellow and the ALS specialist found full strength throughout my legs.
As of today, I still have pain in my left knee…it tends to appear if I don’t exercise for a couple of days. I don’t worry too much about the legs since the EMG should have found something.
The symptoms that trouble me are a general feeling of lack of coordination in my mouth – as evidenced by biting my tongue while speaking and sometimes feeling generally tongue tied when speaking. Nobody else has noticed slurring, though I feel as though I notice it…the slurring seems to come and go. The biting has gotten me to the point where I get nervous every time I know that I will need to speak. I also worry about the lump in my throat. I started taking Prilosec while taking Celexa to see if that would reduce the lump sensation. It may have…reducing the lump from a 10 to a 7, perhaps. It’s tough to say since I also reduced the Celexa from 20 mgs to 10mgs around the same time. So, lump in throat plus lack of motor coordination in my mouth.
Apologies in advance if I seem like a paranoid jerk for wasting your time. Please let me know your thoughts.
I’ve omitted some details so feel free to ask questions.
