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Hello Dr Corenman:
I appreciate you taking the time to read this. I have a fairly complex case that no one has been able to figure out.
I am a 42 year old male and my symptoms started about a year ago 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 perceived muscle weakness in thighs, arms and shoulders and some minor tingling in right fingers (which subsided in first month).
I had a brain MRI which was clean to rule out MS. I had two EMGs, both negative for any issues (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 some noticeable muscle shrinkage in my right 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, especially RT, have shrunk and are softer. No amount of weight lifting seems rebuilds bulk. About this time, began experiencing some mild shortness of breath as well, but no “weakness” as measured during neurological exam. Cardiac testing normal, absent two bouts of afib over past three years.
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 a “chronic 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. I have had sciatica on the right side about 9 years ago, which was treated by a chiropractor with manipulation and disc decompression therapy.
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 (April 2019) symptoms continue to progress. Muscle between my right thumb and forefinger have atrophied noticeably (about 30% and is softer). Right thigh is slightly smaller than left, RT tibial muscle nearly gone (about 75%) 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, but RT shoulder blade area is worse. Thighs feel weaker when climbing stairs. I can’t stand in RT heel. Arms feel heavy when reading a book in bed.
I was able to get into UCSF ALS clinic for second opinion (April 2019) as recommmded by Stanford Rheumatologist and saw a fellow 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 atrophy in RT thenar, 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. Reflexes were normal, with a few being hyporeflexive. Cervical and lumbar MRI were completed in April and UCSF clinic doc said she’d be sure I didn’t have ALS if lumbar MRI showed RT L5 nerve root impingement, which it unfortunately didn’t and terrifies me. It should be noted that I’m not currently experiencing really any pain. Nothing compared to sciatica 8 years ago. I have mild scoliosis. Strength testing was normal except for inability to stand on RT heel.
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 and it seems to have moved to left calf now. It hurts to chew and jaw/face muscles are tight and sore at times as well.
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 the following:
Cervical-there is straightening of the cervical lordosis. Moderate disc space narrowing is seen at C5-C6 with marginal osterphytes. No signal abnormality is seen in cervical spinal cord. The craneocervical junction is normal.
C2-3 there is no disc bulge or protrusions. The neural foramina are patent
C3-4 there is a left side spondylitic ridge contacting the ventral cord. There is no central spinal stenosis. There is mild narrowing of the left neural foramina due to intraforaminal spurring.
C4-5 there is a posterior spondylitic ridge contacting but not deforming the central spinal cord. The neural foramina are patent. A small perineural cyst is seen in the left neural foramina.
C5-6 there is a right sided spondylitic ridge mildly flattening the central spinal cord. The is minimal enfolding of the ligamentum flavum posteriorly. There is mild central spinal stenosis. There is severe narrowing of bilateral neural foramina with impingement on the the C6 nerve root.
At C6-7 there is a small paracentral disc protrusion effacing the vebtral subarachnoid space. The neural foramina are patent. A small perineural cyst is seen to the left of the neural foramina.
At C7-T1 there is no disc bulge or protrusions. The neural foramina are patent.
Multiple cervical lymph nodes are seen bilaterally.
Lumbar: There is a transitional vertebral body at the lumbrosacral junction which is labeled as partially sacralized S1. A rudimentary disc is present at S1-2. There may be a tiny hypoplastic rib at L1. There are mild disc space narrowing at L3-4 and moderate disc space narrowing at L2-3, L4-5, and L5-S1 with desiccation. There is a large Schmorals node at the superior end plate of L3. There are Schmorals nodes and type two degenerative endplate changes at L4-5 and L5-S1. There is some degenerative endplate edema at L4-5. There are mild retrolisthesis at L3-4 and L4-5. The conus medullaris terminates at lower L1.
At T12-L1, there is no disc bulge or protrusion. Neural foramina are patent.
At L1-2, there is no disc bulge or protrusion. Neural foramina are patent.
At L2-3, there is an annular fissure. There is a small broad based right paracentral disc protrusion deforming the ventral thecal sac. There is no central or neural foramina stenosis. There is mild narrowing of the right lateral recess. The disc protrusion contacts the right L3 nerve root.
At L3-L4, there are annular fissures. There is a right sided disc bulge, facet arthropathy, prominent posterior epidural fat and short Pericles causing mild central stenosis. There is mild narrowing of the right neural foramen and right lateral recesss.
At L4-5, there is diffuse disc bulge or spondylitic ridge, mild facet arthropathy, thickening if the left ligamentum flavum and short pedicles causing mild central spinal stenosis. Minimal fluid is seen in the right facet joint. A tiny sinovial cyst is seen medial to the left facet joint. There is mild narrowing of the bilateral neural foramina and mild to moderate narrowing of the lateral recesses.
At L5-S1, there is diffuse disc bulge or bony ridge, mild facet atropathy and short pedicles causing mild central spinal stenosis. There is mild narrowing of the lateral recesses. A trace of fluid is seen in the facet joints.
There is edema in the posterior subcutaneous fat.
I have my fourth EMG scheduled at UCSF in a few weeks to see if any changes occurred from last and am terrified of ALS. Most people say that an EMG picks up ALS, even at the very early stages. Stanford said I didn’t have als. UCSF said they’re pretty sure I don’t, but want to complete EMG again in a couple months to make sure. My concern is that the 3rd EMG detected what they called a “chronic L5 radiculopathy,” when the EMGs in the months prior of the same didn’t detect it at all, so how can it be old. Also, my lumbar mri didn’t detect my L5 nerve root to be compressed and I’m not having sciatica pain, but constant tibial twitching and significant atrophy and some numbness that I’ve had for years in the RT tib ant. I saw a non surgical spine specialist last month who wasn’t concerned about my mri, said he wasn’t recommending any treatment or surgery and gave me some muscle relaxers and gabapentin and told me to continue ruling out ALS, as he felt that’s the direction I needed to look. My questions are:
1-could my cervical/lumbar issues be causing my symptoms (wide spread Twitching, weakness, atrophy)?
2-I’ve received chiropractic care since high school. I hadn’t gone for several years, but recently returned for weekly adjustments. No change in symptoms since going back, except for twitching in legs has gotten worse. Based upon MRIs, is chiropractic a good idea or contraindicated?
3-Do my symptoms seem more neuromuscular or should I see a spine surgeon?
4-Any advice, recommendations or suggestions would be very much appreciated.
I realize this is a really long post. I’m terrified for my life at the moment and trying to find solutions. Thanks so much again for taking the time to read this and answer my questions.
Your symptoms (generalized twitching, tongue involvement, fatigue and atrophy) do sound to be an ALS variant. Chiropractic will not give you symptom support so if you gain no benefit, you don’t need further chiropractic care.
Your spine issues will not cause twitching, atrophy or fatigue so spinal treatment can be ruled out.
Your symptoms seem to be neurogenic in nature.
You need a great neurologist who is experienced in neuromuscular disorders to take all your symptoms, exam and workup and come up with a conclusion for your disorder. You can get on the internet and read some research papers about your condition, read the names on the papers and find out what institution they are from. Make an appointment with the lead author or the most experienced one.
Dr. Corenman
PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books.Hello Dr Corenman,
I appreciate your reply. I had a new EMG done last week at the UC San Francisco ALS clinic where they did needle EMG of 15 different muscles on both sides of my body, upper and lower. The new EMG showed active denervation (fibs, positive sharp waves) now in my RT Tibialis Anterior muscle (last EMG only showed chronic denervation in that muscle) and now the new EMG also showed some chronic denervation in two other muscles (flexor digitorium longus and tensor fasciae latea), both along the L5 nerve root. All other muscles were clean. So, given that the issues seems confined to the L5, they are thinking this isn’t ALS, but instead a localized problem or if it’s ALS, it’s a slowly progressive case. They said, that a year into symptoms, they’d have expected to see more wide-spread neurogenic abnormalities by now. So, things seem complex. As you can see above from my lumbar mri results, it didn’t show an L5 nerve root compression back in April. My atrophy and numbness in my RT Tibialis Anterior continues to get worse. I can still walk, but can’t stand on RT heel and the four right toes (small toes) on right foot feel looser. UCSF has ordered neurography (Neurogram) with contrast to see if my last mri missed a nerve compression issue. I did have sciatica bad about 9 years ago in right leg, and have mild scoliosis, but currently am not experiencing and sciatica pain. I do have some numbness in my TA muscle. Unfortunately, the next available appt for the neurography is mid-October at which time the UCSF neuro radiologist is going to review it. I’m worried foot drop issues will be worse by then or permanent damage to the nerve root could occur, as my RT Tib Ant is already about 75% atrophied when compared to the left TA muscle.
1. Is it possible for an mri to miss an L5 radiculopathy?
2. MRI did detect a C6 and L3 nerve root contact on my MRI. Can either of those be causing my issues?
3. Should I get a thoracic mri while I’m waiting for neurography?
4. None of my doctors seem to feel this is an urgent issue, but with the muscle loss in the TA and weakness in RT leg, I’m concerned. Do you have any advice or suggestions?Thank you so much in advance for your time and thoughts.
Is it possible for an mri to miss an L5 radiculopathy? If we are talking about compressive radiculopathy, it would be highly unusual for an MRI to miss a compressive radiculopathy, especially if the radiologist was looking for it.
MRI did detect a C6 and L3 nerve root contact on my MRI. Can either of those be causing my issues? No.
Should I get a thoracic mri while I’m waiting for neurography? If you have not had one in the past, a new thoracic MRI could be helpful.
“None of my doctors seem to feel this is an urgent issue, but with the muscle loss in the TA and weakness in RT leg, I’m concerned. Do you have any advice or suggestions”? If you had a disorder that had something these doctors could address, then time is important. However, if seems like your disorder is genetic or inherent in your genome and they have no current treatment to affect this problem.
“RT Tibialis Anterior muscle (last EMG only showed chronic denervation in that muscle) and now the new EMG also showed some chronic denervation in two other muscles (flexor digitorium longus and tensor fasciae lata), both along the L5 nerve root”. These problems could be from L4, L5 and S1 involvement.
Dr. Corenman
PLEASE REMEMBER, THIS FORUM IS MEANT TO PROVIDE GENERAL INFORMATION ON SPINE ANATOMY, CONDITIONS AND TREATMENTS. TO GET AN ACCURATE DIAGNOSIS, YOU MUST VISIT A QUALIFIED PROFESSIONAL IN PERSON.
Donald Corenman, MD, DC is a highly-regarded spine surgeon, considered an expert in the area of neck and back pain. Trained as both a Medical Doctor and Doctor of Chiropractic, Dr. Corenman earned academic appointments as Clinical Assistant Professor and Assistant Professor of Orthopaedic Surgery at the University of Colorado Health Sciences Center, and his research on spine surgery and rehabilitation has resulted in the publication of multiple peer-reviewed articles and two books. -
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