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4 years of symptoms with no clear explaination...
37 y.o. male – Since March ‘06, experienced litany of neurological issues. Most sensory (paresthesias & transient sensation reduction), Slight trouble swallowing before & felt a little “tongue tied”. Also have fasciculations all over body (onset around fall ’06 - not present in flexed muscle - only when relaxed). 3x since ’06, had strange sensation upon flexing my neck - does not radiate down spine-felt like small section of the skin vibrated (different limb each time) . Recently, noticed difficulty maintaining erection. Right testicle is much lower than the left & is not nearly as responsive as left upon contraction of PC muscle. Developed anisocoria (maybe 1 – 1.5mm) in one eye with mild ptosis. Vision sometimes “shaky” ( wiggles) when looking @ complex patterns (e.g. oriental rugs) for 1yr but no noticeable nystagmus
Have been to 3 neurologists, nationally known MS DR & toxicologist. Have had the normal workup several times (lyme, thyroid, diabetes, B12, etc. - normal). Have had three MRI’s of head & neck (last was July ’08 & post development of anisocoria / ptosis) – all clear. I have had NCV (leg, arm, etc.) with pretty normal findings (mild entrapment in arm, otherwise ok). All Dr’s say they ruled out the bad stuff (MS, ALS), have said my neuro exam is perfect (slightly brisk knee jerk, that’s it). No other explanation for symptoms. Physically, I in great shape (no issues with walking, movement, can bench 1.5x my weight & squat 2x my weight). However, highly anxious about all this (trouble sleeping, some depression).
So, 1) would you be concerned about MS, ALS, etc. given clear MRI x 3 & DR’s opinions, 2) Care to hazard guess as to what is causing these things, 3) could this be psychosomatic, 4) What would you do next if you were in my shoes?
Have been to 3 neurologists, nationally known MS DR & toxicologist. Have had the normal workup several times (lyme, thyroid, diabetes, B12, etc. - normal). Have had three MRI’s of head & neck (last was July ’08 & post development of anisocoria / ptosis) – all clear. I have had NCV (leg, arm, etc.) with pretty normal findings (mild entrapment in arm, otherwise ok). All Dr’s say they ruled out the bad stuff (MS, ALS), have said my neuro exam is perfect (slightly brisk knee jerk, that’s it). No other explanation for symptoms. Physically, I in great shape (no issues with walking, movement, can bench 1.5x my weight & squat 2x my weight). However, highly anxious about all this (trouble sleeping, some depression).
So, 1) would you be concerned about MS, ALS, etc. given clear MRI x 3 & DR’s opinions, 2) Care to hazard guess as to what is causing these things, 3) could this be psychosomatic, 4) What would you do next if you were in my shoes?
MEDICAL PROFESSIONAL
Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with a doctor.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
The twitching you experience in various body parts could be due to benign fasiculation syndrome, or BFS. Benign fasciculation syndrome, which I will abbreviate as BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low.
When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.
Neuropathy, a disorder of the peripheral nerves as occurs due to diabetes and other conditions, would lead to more constant sensory symptoms. Neuropathy can lead to erectile dysfunction. Regarding your transient sensory symptoms, it is difficult to explain them since they come and go, and more importantly because you had NCS that were normal. A small fiber neuropathy (affecting the small nerves in the skin) can lead to sensory symptoms and other autonomic symptoms without abnormalities on NCS, but the sensory symptoms most commonly include constant burning and tingling.
Based on the information you provide above, including your symptoms and normal testing, there is no evidenced again just on the information you provide above that you have MS or ALS. These disorders have specific MRI/EMG findings respectively, and over time would have manifested themselves more clearly if they had started in 2006. Putting all your symptoms together, including transient sensory symptoms, erectile dysfunction, whole body twitching, in the setting of extensive normal testing, one consideration would be stress, anxiety and/or depression which can lead to a vareity of physical symptoms without an identifiable cause. The severe form of underlying psychological stressors leading to physical symptoms is known as somatization disorder, in which there are multiple complaints including involving multiple systems including gastrointestinal, nervous, sexual, pain etc. This is obviously a diagnosis of exclusion, after the appropriate tests have been completed. If you are suffering from significant stress, anxiety, and/or depression, discussion of this with your doctors, to help identify the most appropriate therapy which could include counseling and/or medications, is recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
Without the ability to examine and obtain a history, I can not tell you what the exact cause of the symptoms is. However I will try to provide you with some useful information.
The twitching you experience in various body parts could be due to benign fasiculation syndrome, or BFS. Benign fasciculation syndrome, which I will abbreviate as BFS, is a condition in which there are involuntary twitches of various muscle groups, most commonly the legs but also the face, arms, eyes, and tongue. If the diagnosis is confirmed and other causes are excluded, it can be safely said that the likelihood of progression or occurrence of a serious neurologic condition is low.
When BFS is present but not particularly bothersome or disabling, treatment is not necessary. If severe and it requires treatment, there are a few medication options though this condition is not very common, and the research that has been done on its treatment is limited. Minimizing caffeine and stress, and treating anxiety if it is present, will improve your symptoms.
Neuropathy, a disorder of the peripheral nerves as occurs due to diabetes and other conditions, would lead to more constant sensory symptoms. Neuropathy can lead to erectile dysfunction. Regarding your transient sensory symptoms, it is difficult to explain them since they come and go, and more importantly because you had NCS that were normal. A small fiber neuropathy (affecting the small nerves in the skin) can lead to sensory symptoms and other autonomic symptoms without abnormalities on NCS, but the sensory symptoms most commonly include constant burning and tingling.
Based on the information you provide above, including your symptoms and normal testing, there is no evidenced again just on the information you provide above that you have MS or ALS. These disorders have specific MRI/EMG findings respectively, and over time would have manifested themselves more clearly if they had started in 2006. Putting all your symptoms together, including transient sensory symptoms, erectile dysfunction, whole body twitching, in the setting of extensive normal testing, one consideration would be stress, anxiety and/or depression which can lead to a vareity of physical symptoms without an identifiable cause. The severe form of underlying psychological stressors leading to physical symptoms is known as somatization disorder, in which there are multiple complaints including involving multiple systems including gastrointestinal, nervous, sexual, pain etc. This is obviously a diagnosis of exclusion, after the appropriate tests have been completed. If you are suffering from significant stress, anxiety, and/or depression, discussion of this with your doctors, to help identify the most appropriate therapy which could include counseling and/or medications, is recommended.
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck.
On 3/17/10, Saw Neurologist again. Complete neuro exam. Only finding was minimal abdominal reflexes. Told no way I had ms, ALS, etc.
Couple of additional notes:
1) 3/8/10 had Humphrey visual field test @ optometrist - perfect result. Digital imaging of eye & optic disc normal except for floaters. Based on personal reading, I believe >75% of MS patients have abnormal HVF findings - even before Optic Neuritis. Thus, this would seem to be encouraging, no?
2) RE: ED issue - bulbocavernosus reflex present, cremaster absent bilaterally based on personal attempts to elicit. Occasional nocturnal erections. Suspect ED is psychogenic given extreme anxiety.
3) Only meds are OTC allergy medicine and b-12 for low levels.
1) 3/8/10 had Humphrey visual field test @ optometrist - perfect result. Digital imaging of eye & optic disc normal except for floaters. Based on personal reading, I believe >75% of MS patients have abnormal HVF findings - even before Optic Neuritis. Thus, this would seem to be encouraging, no?
2) RE: ED issue - bulbocavernosus reflex present, cremaster absent bilaterally based on personal attempts to elicit. Occasional nocturnal erections. Suspect ED is psychogenic given extreme anxiety.
3) Only meds are OTC allergy medicine and b-12 for low levels.
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