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Complicated migraine, MS, or . . . what?
Thank you in advance for your valued opinion. I'm a west coast reader of this most valuable forum and never thought I'd actually get a chance to post until a little early morning new year's day insomnia--happy new year to all!
I'm a 39-year-old male with a family history significant for MS (father and paternal uncle) each with a chronically progressive course. I've led an extremely physically active lifestyle and have enjoyed otherwise very good health. My symptoms have occurred over the better part of a decade, beginning in 1990 as tingling/itching in the lower portion of my hands. I was in the mideast deployed with the Air Force during Desert Shield/Storm. I did experience a 5-day illness of extreme dysentery(sp)and fever. A possible trigger? Who knows. In 1992, I experienced "lightning bolt" sensations through my toes, pin ***** sensations in my legs, stinging, crawling, and itching sensations everywhere. My first thought, naturally, was MS. Early '93 MRI was negative and only finding was mild unlnar neuropathy. These "fleeting, migrating" parasthesias occurred on an episodic basis, bilaterally and literally head to toe. In '94, I began to notice pulsating frontal headaches associated with the parasthesias, visual disturbances (brief floating shapes, running dots, etc.), and increasing tinnitus. Since then, I have experienced symptom-free periods that have grown shorter in duration, and, upon reoccurrance they seem to evolve, becoming more pronounced with new sensations. I experienced no noticeable muscle symptoms until late '98--mild trembling, stiffness, frequent twitching, shots of muscle pain--prompting a neuro consultation. Results: neg head MRI, c5-6 herniation, slightly elevated CSF protein (46?), muted reflexes, basically normal basic neuro exam. Today, my most bothersome symptoms are the tinnitus and muscle stiffness which makes me vulnerable to acute back strain. I still have good muscle strength but running makes my legs stiff and hard, so I have retired from the men's basketball league (poor me). My symptoms are now clearly associated with this pulsating frontal headache which can last for days on end and causes random jolts of head,facial, and eye pain. When the headache resolves, I feel good, but it is back again in short order. A repeat head MRI in Oct '00 was negative. I take only 3-4 tablets of amytriptiline at night, occasional 600mg ibuprofin, and antiacid tablets for frequent heartburn.
As you can see, I given this more than just a "tincture of time" and still have no answers. I know from reading the many previous posts that this is atypical for MS. It is often difficult to think otherwise, however, when this headache and corresponding symptoms are at their worst.
My questions: No one has ever suggested evoked potentials tests, probably due to the normal MRIs. Should I pursue this? Also, would an MRA make sense? Any other opinions or avenues to explore? Thanks again.
I'm a 39-year-old male with a family history significant for MS (father and paternal uncle) each with a chronically progressive course. I've led an extremely physically active lifestyle and have enjoyed otherwise very good health. My symptoms have occurred over the better part of a decade, beginning in 1990 as tingling/itching in the lower portion of my hands. I was in the mideast deployed with the Air Force during Desert Shield/Storm. I did experience a 5-day illness of extreme dysentery(sp)and fever. A possible trigger? Who knows. In 1992, I experienced "lightning bolt" sensations through my toes, pin ***** sensations in my legs, stinging, crawling, and itching sensations everywhere. My first thought, naturally, was MS. Early '93 MRI was negative and only finding was mild unlnar neuropathy. These "fleeting, migrating" parasthesias occurred on an episodic basis, bilaterally and literally head to toe. In '94, I began to notice pulsating frontal headaches associated with the parasthesias, visual disturbances (brief floating shapes, running dots, etc.), and increasing tinnitus. Since then, I have experienced symptom-free periods that have grown shorter in duration, and, upon reoccurrance they seem to evolve, becoming more pronounced with new sensations. I experienced no noticeable muscle symptoms until late '98--mild trembling, stiffness, frequent twitching, shots of muscle pain--prompting a neuro consultation. Results: neg head MRI, c5-6 herniation, slightly elevated CSF protein (46?), muted reflexes, basically normal basic neuro exam. Today, my most bothersome symptoms are the tinnitus and muscle stiffness which makes me vulnerable to acute back strain. I still have good muscle strength but running makes my legs stiff and hard, so I have retired from the men's basketball league (poor me). My symptoms are now clearly associated with this pulsating frontal headache which can last for days on end and causes random jolts of head,facial, and eye pain. When the headache resolves, I feel good, but it is back again in short order. A repeat head MRI in Oct '00 was negative. I take only 3-4 tablets of amytriptiline at night, occasional 600mg ibuprofin, and antiacid tablets for frequent heartburn.
As you can see, I given this more than just a "tincture of time" and still have no answers. I know from reading the many previous posts that this is atypical for MS. It is often difficult to think otherwise, however, when this headache and corresponding symptoms are at their worst.
My questions: No one has ever suggested evoked potentials tests, probably due to the normal MRIs. Should I pursue this? Also, would an MRA make sense? Any other opinions or avenues to explore? Thanks again.
Anything is worth a try. Many, many thanks!
Dear Croz:
Sorry to hear about your symptoms. For the length of time that you have had your symptoms, the normal MRI of the brain would suggest against MS. The overall general symptoms that you have would also suggest against MS. There are some that thing the Gulf War syndrome might be a mitochondrial effect, and some of your symptoms might be mitochondrial: migraine headaches, and some parasthesias. If this were the case, then riboflavin at 400 mg taken at bedtime might help your migraines and maybe some of the parasthesias.
There are some who doubt the mitochondrial theory of Gulf War syndrome. For the headache, in addition to the riboflavin, you can combine the ibuprofen (600-1000 mg) and if the headache doesn't resolve in 20 minutes or so then tylenol at 600-1000 mg can be taken. You can repeat this up to 3 times in a day. The elavil is okay for prophylaxis of the migraine. In some of our mitochondrial patients, neurotin has helped the shooting pain associated with the headache.
I doubt if an MRA would show much as your symptoms are episodic and frequent. A vision evoked potential could let you know if a demyelination process has/is occurring in your optic nerve. The history of MS in your family might make this a good idea. However, I bet it will be negative. But, unless you do the test, you'll never know.
If you believe the mitochondrial connection to the Gulf War syndrome and you feel that things started about that time, then the riboflavin is a good idea.
Let us know how things go.
Sincerely,
CCF Neuro MD
Sorry to hear about your symptoms. For the length of time that you have had your symptoms, the normal MRI of the brain would suggest against MS. The overall general symptoms that you have would also suggest against MS. There are some that thing the Gulf War syndrome might be a mitochondrial effect, and some of your symptoms might be mitochondrial: migraine headaches, and some parasthesias. If this were the case, then riboflavin at 400 mg taken at bedtime might help your migraines and maybe some of the parasthesias.
There are some who doubt the mitochondrial theory of Gulf War syndrome. For the headache, in addition to the riboflavin, you can combine the ibuprofen (600-1000 mg) and if the headache doesn't resolve in 20 minutes or so then tylenol at 600-1000 mg can be taken. You can repeat this up to 3 times in a day. The elavil is okay for prophylaxis of the migraine. In some of our mitochondrial patients, neurotin has helped the shooting pain associated with the headache.
I doubt if an MRA would show much as your symptoms are episodic and frequent. A vision evoked potential could let you know if a demyelination process has/is occurring in your optic nerve. The history of MS in your family might make this a good idea. However, I bet it will be negative. But, unless you do the test, you'll never know.
If you believe the mitochondrial connection to the Gulf War syndrome and you feel that things started about that time, then the riboflavin is a good idea.
Let us know how things go.
Sincerely,
CCF Neuro MD
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