Fasciculation1
New member
- Joined
- May 3, 2019
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
- City
- Central Valley
Hi All:
I have read the sticky (several times actually to make sure I absorbed it all). I’d much appreciate any feedback/recommendations. I am a 42 year old male and my symptoms started about eight months ago. I know everyone’s time here is very valuable, so i really appreciate you taking the time to read this.
My symptoms started with wide spread muscle twitches and debilitating fatigue, severe insomnia (I can’t sleep w/out sleep meds, tightness in muscles of upper back/neck and muscle pain in thighs, arms and shoulders and some minor tingling in fingers (which subsided in first month).
I had a brain MRI which was clean to rule out MS. I had two EMGs, both negative (or clean as others say) within the first four months of symptom onset (the 2nd by a general neurologist who by no means specializes in ALS and didn’t even do a written report and the first by a physiatrist at a sports medicine clinic where all he does is EMGs and wrote a very thorough report). By the fifth month (January/19), I was able to be seen at the Stanford ALS clinic and had very noticeable bilateral muscle shrinkage in my shoulders, arms and upper back, although the neurologist there didn’t even want to look at it, as he said he couldn’t tell anything b/c he didn’t know my “baseline.”
Muscles in arms have shrunk and are softer. No amount of weight lifting rebuilds bulk. About this time, began experiencing shortness of breath as well, but no “weakness” as measured during neurological exam.
Stanford did an EMG (this would be my third) and did right arm and leg as well as tongue and low back muscles. This time the needle EMG showed evidence of “denervation with reinnervation changes in the right tibial anterior muscle with associated reduced recruitment.” It also showed the tongue had “poor relaxation”. EMG was otherwise “clean” as was nerve conduction and they chalked the right tibial issue up to an old L5 radiculopathy, however the first EMG only five months early didn’t note anything dirty in right tibia at all and that physician was a back/sports medicine specialist, so he should have detected it if it were really “old”. He was very thorough in his exam.
Stanford Neuro recommended a rheumatology eval and labs, which I also had done at Stanford, given past positive ANA, but titers were low at 1:40. Rheumatologist said my issues aren’t rheumatological in nature (per exam and a ton of labs, including R/O polymosyits), and if he didn’t already know I had been seen at Stanford Neurology, thats exactly where he would have referred me next, as he felt my issues are really “neuromuscular” in nature. He recommended a second opinion at another teaching institution with an ALS center.
Fast-forward two months, symptoms continue to progress. Muscle between my right thumb and forefinger have atrophied noticeably (about 50%) and skin on right hand in general is as wrinkly as my 93 year old great aunts, from the reduction in hand muscle mass/volume. It also wants to curl when relaxed. Right thigh is noticeably smaller than left, RT tibial muscle nearly gone when I try to flex foot back compared to left leg, girlfriend continues to note that my shoulders bilaterally are getting “boney” when she rubs back and my muscle tone in arms has turned to that of jello.
Shirts are fitting loosely in upper body, especially around arms and chest and Ive actually gained 40lbs. When symptoms first started, I lost 20lbs in two month. Due to severe insomnia, was put on Remeron for sleep and have since gained 40 lbs. Muscles directly under my arms around rib cage area are almost completely gone and replaced by fat. I have loose skin in back now as if I had gastric bypass surgery, but did not.
I am now experiencing excessive salivation, neck fatigue in holding neck up, difficulties swallowing liquids and even saliva gurgles back up upon swallowing, globus sensation (prior barium swallow in Nov/18 showed ‘early presbyesophogus’ which I find concerning as that would mean swallowing muscle is weak—endoscopy scheduled next week), arm and legs feel very heavy and tire easily, have to use hands to push myself up getting out of car, very taxing on thighs to walk up stairs and they feel weak, arms fatigue easily and I cannot hold book up to read in bed for more than a minute without having to put it down.
Resting pulse ox. at home 94-97% on average and had pulmonary function test last week (results still pending). I know my body very well and am a licensed psychotherapist, and know darn well my symptoms aren’t stress and anxiety induced, as alluded to by Stanford Neuro, although will own the anxiety I am experiencing.
Fast forward two months, I was able to get into UCSF ALS clinic for second opinion (last month) as recommmded by Stanford Rheumatologist and saw a resident for most of my appt., who left several times to consult with head physician, and then the actual als clinic doctor came in at tail end of appt who did a very, very, mini exam. Their thoughts (UCSF) are they “don’t really think” I have ALS, although they couldn’t explain my evident RT foot drop (verified by both) nor serious atrophy in my right hand, which they both acknowledged. They ackowledged muscle twitches in back upon observation, and said there does seem to be some possible “lower motor neuron” involvement. They want me to wait six months and return for another EMG. Ugh. Six months?
I of course pray that I don’t have ALS, and I’m so sorry for those struck my this god awful disease, but living 40 plus years of life and knowing my body really well, tells me that something is seriously wrong, and most signs point towards motor neuron disease, IMO. I’ve always worked two jobs, and had tons of energy, but and as of late, not only is it hard to make it through a day of work, just taking a shower totally exhausts me.
I’ve been dropping things with right hand if I’m not purposeful and focused (silverware when putting in drawer, car keys, etc). My tongue is now twitching, as is my lower lip and neck. The twitches initially started as quick moving hits all over the body, but now, they seem to be more focal and persistent (long lasting) in one specific area, versus wide-spread, quickies as they were when they first began. The ones in the right calf are non-stop and more quivering than twitches. It hurts to chew and jaw/face muscles are always tight and sore.
The waiting an additional six months, as recommended by UCSF, is emotionally causing extreme distress. I have major life decisions are major on hold (marriage and kids), while waiting to see if this ugly monster fully shows its head.
I know that there is no cure for ALS currently, but I also know that early intervention may be key in slowing progression (clinical trials, supplements, THC/CBD etc). I have virtually all of the tale-tell signs of early ALS, IMO and symptoms only started 8-9 mos ago, so things are still fairly new, especially given the fact that I’ve read it usually takes 12-18 months on average to receive a Dx.
All autoimmune and rheumatological issues have been ruled out at Stanford and A TON of bloodwork is all normal. Only abnormal labs are borderline low testosterone (300) and borderline low Vit D ((which I’m supplementing). Cervical and Lumbar MRI showed some minor issues with discs, mild spondolysis, but nothing that UCSF doc thought would contribute to my L5 radiculopathy/foot drop.
I’m very type A personality wise, so I’m not really a wait and see type guy and this a sooo hard, being in limbo like this. It’s defintely forcing me to grow.
My major questions:
1) can an EMG really tell if a raduculopaty is old or new? Stanford said EMG CAN definitely tell and they chalked it up up to an old L5 radiculopathy? UCSF doc said you CANNOT tell if the denervation/reinnervation is old or new, which is why she wants to re-do EMG in 6mos. If it were really “old”, the first EMG I had done on right side should have picked it up.
Any other thoughts about the Stanford EMG findings or language used (I’m not EMG literate)? “Denervation/reinnervation with associated reduced recruitment”—is this usually what is seen more widespread on EMGs when ALS is present?
2) I don’t feel like any of the docs I’ve seen really care to help me find answers and “wait and see” with something like ALS, can mean significant functional decomp., without any early intervention. Given the budding hopeful treatments in trail now (brainstorm and others), early intervention is so important. Therefore, should I seek a third opinion? If so, does anyone have any recommendations? I’m in California, but am willing to travel anywhere for real answers.
3) Would you recommend I be supplementing with anything specific now, even though I am in diagnostic limbo?
4) At what point does one ask about a lumbar puncture? No doc has mentioned it yet.
5)Any other thoughts, opinions or suggestions?
I know everyone’s time here is so valuable and I thank you in advance.
I have read the sticky (several times actually to make sure I absorbed it all). I’d much appreciate any feedback/recommendations. I am a 42 year old male and my symptoms started about eight months ago. I know everyone’s time here is very valuable, so i really appreciate you taking the time to read this.
My symptoms started with wide spread muscle twitches and debilitating fatigue, severe insomnia (I can’t sleep w/out sleep meds, tightness in muscles of upper back/neck and muscle pain in thighs, arms and shoulders and some minor tingling in fingers (which subsided in first month).
I had a brain MRI which was clean to rule out MS. I had two EMGs, both negative (or clean as others say) within the first four months of symptom onset (the 2nd by a general neurologist who by no means specializes in ALS and didn’t even do a written report and the first by a physiatrist at a sports medicine clinic where all he does is EMGs and wrote a very thorough report). By the fifth month (January/19), I was able to be seen at the Stanford ALS clinic and had very noticeable bilateral muscle shrinkage in my shoulders, arms and upper back, although the neurologist there didn’t even want to look at it, as he said he couldn’t tell anything b/c he didn’t know my “baseline.”
Muscles in arms have shrunk and are softer. No amount of weight lifting rebuilds bulk. About this time, began experiencing shortness of breath as well, but no “weakness” as measured during neurological exam.
Stanford did an EMG (this would be my third) and did right arm and leg as well as tongue and low back muscles. This time the needle EMG showed evidence of “denervation with reinnervation changes in the right tibial anterior muscle with associated reduced recruitment.” It also showed the tongue had “poor relaxation”. EMG was otherwise “clean” as was nerve conduction and they chalked the right tibial issue up to an old L5 radiculopathy, however the first EMG only five months early didn’t note anything dirty in right tibia at all and that physician was a back/sports medicine specialist, so he should have detected it if it were really “old”. He was very thorough in his exam.
Stanford Neuro recommended a rheumatology eval and labs, which I also had done at Stanford, given past positive ANA, but titers were low at 1:40. Rheumatologist said my issues aren’t rheumatological in nature (per exam and a ton of labs, including R/O polymosyits), and if he didn’t already know I had been seen at Stanford Neurology, thats exactly where he would have referred me next, as he felt my issues are really “neuromuscular” in nature. He recommended a second opinion at another teaching institution with an ALS center.
Fast-forward two months, symptoms continue to progress. Muscle between my right thumb and forefinger have atrophied noticeably (about 50%) and skin on right hand in general is as wrinkly as my 93 year old great aunts, from the reduction in hand muscle mass/volume. It also wants to curl when relaxed. Right thigh is noticeably smaller than left, RT tibial muscle nearly gone when I try to flex foot back compared to left leg, girlfriend continues to note that my shoulders bilaterally are getting “boney” when she rubs back and my muscle tone in arms has turned to that of jello.
Shirts are fitting loosely in upper body, especially around arms and chest and Ive actually gained 40lbs. When symptoms first started, I lost 20lbs in two month. Due to severe insomnia, was put on Remeron for sleep and have since gained 40 lbs. Muscles directly under my arms around rib cage area are almost completely gone and replaced by fat. I have loose skin in back now as if I had gastric bypass surgery, but did not.
I am now experiencing excessive salivation, neck fatigue in holding neck up, difficulties swallowing liquids and even saliva gurgles back up upon swallowing, globus sensation (prior barium swallow in Nov/18 showed ‘early presbyesophogus’ which I find concerning as that would mean swallowing muscle is weak—endoscopy scheduled next week), arm and legs feel very heavy and tire easily, have to use hands to push myself up getting out of car, very taxing on thighs to walk up stairs and they feel weak, arms fatigue easily and I cannot hold book up to read in bed for more than a minute without having to put it down.
Resting pulse ox. at home 94-97% on average and had pulmonary function test last week (results still pending). I know my body very well and am a licensed psychotherapist, and know darn well my symptoms aren’t stress and anxiety induced, as alluded to by Stanford Neuro, although will own the anxiety I am experiencing.
Fast forward two months, I was able to get into UCSF ALS clinic for second opinion (last month) as recommmded by Stanford Rheumatologist and saw a resident for most of my appt., who left several times to consult with head physician, and then the actual als clinic doctor came in at tail end of appt who did a very, very, mini exam. Their thoughts (UCSF) are they “don’t really think” I have ALS, although they couldn’t explain my evident RT foot drop (verified by both) nor serious atrophy in my right hand, which they both acknowledged. They ackowledged muscle twitches in back upon observation, and said there does seem to be some possible “lower motor neuron” involvement. They want me to wait six months and return for another EMG. Ugh. Six months?
I of course pray that I don’t have ALS, and I’m so sorry for those struck my this god awful disease, but living 40 plus years of life and knowing my body really well, tells me that something is seriously wrong, and most signs point towards motor neuron disease, IMO. I’ve always worked two jobs, and had tons of energy, but and as of late, not only is it hard to make it through a day of work, just taking a shower totally exhausts me.
I’ve been dropping things with right hand if I’m not purposeful and focused (silverware when putting in drawer, car keys, etc). My tongue is now twitching, as is my lower lip and neck. The twitches initially started as quick moving hits all over the body, but now, they seem to be more focal and persistent (long lasting) in one specific area, versus wide-spread, quickies as they were when they first began. The ones in the right calf are non-stop and more quivering than twitches. It hurts to chew and jaw/face muscles are always tight and sore.
The waiting an additional six months, as recommended by UCSF, is emotionally causing extreme distress. I have major life decisions are major on hold (marriage and kids), while waiting to see if this ugly monster fully shows its head.
I know that there is no cure for ALS currently, but I also know that early intervention may be key in slowing progression (clinical trials, supplements, THC/CBD etc). I have virtually all of the tale-tell signs of early ALS, IMO and symptoms only started 8-9 mos ago, so things are still fairly new, especially given the fact that I’ve read it usually takes 12-18 months on average to receive a Dx.
All autoimmune and rheumatological issues have been ruled out at Stanford and A TON of bloodwork is all normal. Only abnormal labs are borderline low testosterone (300) and borderline low Vit D ((which I’m supplementing). Cervical and Lumbar MRI showed some minor issues with discs, mild spondolysis, but nothing that UCSF doc thought would contribute to my L5 radiculopathy/foot drop.
I’m very type A personality wise, so I’m not really a wait and see type guy and this a sooo hard, being in limbo like this. It’s defintely forcing me to grow.
My major questions:
1) can an EMG really tell if a raduculopaty is old or new? Stanford said EMG CAN definitely tell and they chalked it up up to an old L5 radiculopathy? UCSF doc said you CANNOT tell if the denervation/reinnervation is old or new, which is why she wants to re-do EMG in 6mos. If it were really “old”, the first EMG I had done on right side should have picked it up.
Any other thoughts about the Stanford EMG findings or language used (I’m not EMG literate)? “Denervation/reinnervation with associated reduced recruitment”—is this usually what is seen more widespread on EMGs when ALS is present?
2) I don’t feel like any of the docs I’ve seen really care to help me find answers and “wait and see” with something like ALS, can mean significant functional decomp., without any early intervention. Given the budding hopeful treatments in trail now (brainstorm and others), early intervention is so important. Therefore, should I seek a third opinion? If so, does anyone have any recommendations? I’m in California, but am willing to travel anywhere for real answers.
3) Would you recommend I be supplementing with anything specific now, even though I am in diagnostic limbo?
4) At what point does one ask about a lumbar puncture? No doc has mentioned it yet.
5)Any other thoughts, opinions or suggestions?
I know everyone’s time here is so valuable and I thank you in advance.
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