Aa
electric shocks and possible sciatica, neck pain
hi to all, i'm hoping some kind person here can advise.... for the past two years i've been having problems that started with numbness and tingling on a medication. at first i thought they were neck problems, since i have a lot of pain in my upper neck. but then about six months ago i started having pain in what seems like my sciatic nerve and a tingling/burning on the top of my foot on that side. now in the last few weeks i've begun to have an intermittent stabbing pain in my eyes (which is followed by moderate eye pain for a few days). i went to the opthamologist who said my eyes looked good but were dry and prescribed eye drops which seem to help. but then i also began to have the same kind of electric shocks everywhere in my body, intermittently and totally randomly (i don't even have to be moving, and it doesn't happen when i move my head down as i've read it does for some). i also have been having pain and what seems like swelling at the bottom of my skull in the back, which i've had for two years with the neck thing on and off, but has definitely been worse. and my upper lip and skin under my nose also tingles and seems slightly numb, but comes and goes. i've also had dizziness and fatigue recently, but i do think that i might have a sinus problem going on. i had a neuro office exam with nerve conduction studies six months ago when this all started and it was totally normal. i have no other symptoms besides the sensory ones. does this sound like ms to anyone? or could it be something else--and if so, what? i do have several autoantibodies, including ones that may cause my blood to clot. any advice would be much appreciated!
I really can identify with you. At one time there was really not one person (even my GP) that looked over the whole me. You need a diagnosis, I think, for this to happen. When you're finally diagnosed, it will be probably be either the rheumatologist or neurologist that sort of does the coordinating between the specialists and sort of takes the place of the GP.
Since I thought at one time I had lupus, I did a lot of research into that disease. The best resource that I had was, The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace, M.D. It's a little dated (1995), so you may want to find a more recent book by the same author. However, I still find this a great resource before I was considering MS.
In his book there's a whole chapter devoted to antiphospholipid syndrome. He states "an overwhelming majority of patients with this syndrome have lupus, but a very small percentage of otherwise healthy people have the antiphospholipid syndrome. Also he notes that about 10-30 percent of the people with scleroderma or RA have the syndrome.
He also devotes a chapter to Sjogren's as well.
You mentioned the miscarriages which is at the top of the chart/table labeled "Complications Caused by Antiphospholipid Antibodies in Lupus". Also noted are the hematologic (clots, low platelet counts), neurologic (strokes, migraines, TIA's), cardiologic, pulmonary, joints, and dermatologic problems.
Treatment for the syndrome (back in 1995) was contraversial. He said that for his patients he prescribed a baby asprin a day, one of the antimalarial drugs used to treat SLE, or an antimalarial drug and an anticoagulate. He stated that even though steroids decrease levels of antiphospholipid antibodies or eliminate them from the blood, they promote clotting and do not necessarily decrease the risk of thromboemboli.
Treatment for MS, for the relapsing-remitting type, is a completely different disease modifying drug. It's critical that you find an excellent neurologist or rheumatologist that differentiates. I think that person will be the neurologist. I don't think a neurologist will jump to the conclusion that you have MS--it's more likely that he'll do tons of tests to rule this out first.
Concerning the Sjogren's--30% of the people with Sjogren's test negatively for SSA/SSB/RO antibodies. That's not a huge percentage, but it's something to consider. Plus, like most autoimmune problems, it waxes and wanes. The only difentitive way to rule this out with a lip biopsy. My sister had one to rule out Sjogren's before her MS diagnosis. I had recently undergone the eye test (it does give false-positive and false-negatives--something to consider) but I don't have problems with dry eyes or mouth (and at the time ANA).
In this book, there were a lot of nervous system references to many, many things--CNS lupus, seizures, headaches, tremor, ataxia, cognitive disfunction, CNS vasculitis, blood clots, lupus myelitis, peripheral nervous system problems, autonomic nervous system problems to name a few. Lupus and other autoimmune diseases can cause many neurological problems.
To rule out CNS vasculitis or MS a spinal fluid analysis may be done. To reveal strokes, bleeding, abscesses an MRI would be the best method. A PET and SPECT scan may help with finding areas of decreased blood flow. A cerebral angiogram would help to find problems with blood veseels of the brain, but this may not be necessary if spinal fluid or blood findings are definitive. An MR angiography can provide nearly as much information as this test though. To find lesions in the brain/spinal cord consistent with MS, an MRI of at least T3 with/without contrast is needed.
Any good neurologist will know something about APS or Sjogren's. This is something that he should consider--and if he hasn't, I'd find a different neuro. Talk to him about these concerns--you may be able to tell right off the bat if he knows anything about it.
As far as the burning, tingling, numbness above your lip probably wouldn't be caused from your cervical spine area--I don't think. I think it has something to do with the cranial nerves (I think the trigeminal nerve is the one around the mouth). I get weird facial sensations on my face, too--sense of something wet, tremor of lip, eyelid, eyelid closing, numbness, and tongue problems (slurred speech and numbness). Luckily, it's not been permanent.
Why does your rheumy want you on steroids? There must be something that he's concerned about. The big thing to look out for in lupus (if that is your problem) that should be monitored consistently are your kidneys. Of course lupus and other autoimmune disease may effect virtually any organ in your body.
I'm curious as why you haven't been diagnosed. Maybe you're not meeting the criteria for one of the diseases . . . What is your skin like? Do you get rashes? Is your skin tight? Do you get migraines? Do you have joint pain?
Something else to consider, if one particular autoimmune disease can't be nailed down is undifferentiated connective tissue disease (UCTD) or mixed connective tissue disease (MCTD). Other diseases that may cause neurological problems: thyroid disorder, B12 deficiency. You may do better to look up MS and diseases that mimic MS on the Web to get a more complete list.
My advice, I guess, is to find out why your rheumy hasn't diagnosed you. Are you happy with him? If not find a different one. That person, if you have a rheumatic disease, should be your rheumy and be the expert on warning signs for problems, etc.
I do think that there's nothing to fear from an MRI (unless you don't have insurance--fear of a hole in your pocketbook). It may be very enlightening (it will even show sinus problems!).
Be sure to point out that problem at the base of your skull and be sure to list every single symptom (including those that don't seem neurological) that you have when you see your neurologist. Don't hold back! My list included 30 symptoms which I gave the nurse before the doctor came in to see me. I listed them from the ones that were most concerning to the least.
You sure have gone through a lot! I sure hope that you find some answers!
Take care,
Deb
Since I thought at one time I had lupus, I did a lot of research into that disease. The best resource that I had was, The Lupus Book: A Guide for Patients and Their Families by Daniel J. Wallace, M.D. It's a little dated (1995), so you may want to find a more recent book by the same author. However, I still find this a great resource before I was considering MS.
In his book there's a whole chapter devoted to antiphospholipid syndrome. He states "an overwhelming majority of patients with this syndrome have lupus, but a very small percentage of otherwise healthy people have the antiphospholipid syndrome. Also he notes that about 10-30 percent of the people with scleroderma or RA have the syndrome.
He also devotes a chapter to Sjogren's as well.
You mentioned the miscarriages which is at the top of the chart/table labeled "Complications Caused by Antiphospholipid Antibodies in Lupus". Also noted are the hematologic (clots, low platelet counts), neurologic (strokes, migraines, TIA's), cardiologic, pulmonary, joints, and dermatologic problems.
Treatment for the syndrome (back in 1995) was contraversial. He said that for his patients he prescribed a baby asprin a day, one of the antimalarial drugs used to treat SLE, or an antimalarial drug and an anticoagulate. He stated that even though steroids decrease levels of antiphospholipid antibodies or eliminate them from the blood, they promote clotting and do not necessarily decrease the risk of thromboemboli.
Treatment for MS, for the relapsing-remitting type, is a completely different disease modifying drug. It's critical that you find an excellent neurologist or rheumatologist that differentiates. I think that person will be the neurologist. I don't think a neurologist will jump to the conclusion that you have MS--it's more likely that he'll do tons of tests to rule this out first.
Concerning the Sjogren's--30% of the people with Sjogren's test negatively for SSA/SSB/RO antibodies. That's not a huge percentage, but it's something to consider. Plus, like most autoimmune problems, it waxes and wanes. The only difentitive way to rule this out with a lip biopsy. My sister had one to rule out Sjogren's before her MS diagnosis. I had recently undergone the eye test (it does give false-positive and false-negatives--something to consider) but I don't have problems with dry eyes or mouth (and at the time ANA).
In this book, there were a lot of nervous system references to many, many things--CNS lupus, seizures, headaches, tremor, ataxia, cognitive disfunction, CNS vasculitis, blood clots, lupus myelitis, peripheral nervous system problems, autonomic nervous system problems to name a few. Lupus and other autoimmune diseases can cause many neurological problems.
To rule out CNS vasculitis or MS a spinal fluid analysis may be done. To reveal strokes, bleeding, abscesses an MRI would be the best method. A PET and SPECT scan may help with finding areas of decreased blood flow. A cerebral angiogram would help to find problems with blood veseels of the brain, but this may not be necessary if spinal fluid or blood findings are definitive. An MR angiography can provide nearly as much information as this test though. To find lesions in the brain/spinal cord consistent with MS, an MRI of at least T3 with/without contrast is needed.
Any good neurologist will know something about APS or Sjogren's. This is something that he should consider--and if he hasn't, I'd find a different neuro. Talk to him about these concerns--you may be able to tell right off the bat if he knows anything about it.
As far as the burning, tingling, numbness above your lip probably wouldn't be caused from your cervical spine area--I don't think. I think it has something to do with the cranial nerves (I think the trigeminal nerve is the one around the mouth). I get weird facial sensations on my face, too--sense of something wet, tremor of lip, eyelid, eyelid closing, numbness, and tongue problems (slurred speech and numbness). Luckily, it's not been permanent.
Why does your rheumy want you on steroids? There must be something that he's concerned about. The big thing to look out for in lupus (if that is your problem) that should be monitored consistently are your kidneys. Of course lupus and other autoimmune disease may effect virtually any organ in your body.
I'm curious as why you haven't been diagnosed. Maybe you're not meeting the criteria for one of the diseases . . . What is your skin like? Do you get rashes? Is your skin tight? Do you get migraines? Do you have joint pain?
Something else to consider, if one particular autoimmune disease can't be nailed down is undifferentiated connective tissue disease (UCTD) or mixed connective tissue disease (MCTD). Other diseases that may cause neurological problems: thyroid disorder, B12 deficiency. You may do better to look up MS and diseases that mimic MS on the Web to get a more complete list.
My advice, I guess, is to find out why your rheumy hasn't diagnosed you. Are you happy with him? If not find a different one. That person, if you have a rheumatic disease, should be your rheumy and be the expert on warning signs for problems, etc.
I do think that there's nothing to fear from an MRI (unless you don't have insurance--fear of a hole in your pocketbook). It may be very enlightening (it will even show sinus problems!).
Be sure to point out that problem at the base of your skull and be sure to list every single symptom (including those that don't seem neurological) that you have when you see your neurologist. Don't hold back! My list included 30 symptoms which I gave the nurse before the doctor came in to see me. I listed them from the ones that were most concerning to the least.
You sure have gone through a lot! I sure hope that you find some answers!
Take care,
Deb
Ok, I'll start by saying that really, I don't understand anything about the antibodies, etc. It's far beyond my scope of comprehension. But, with that being said....
Something about your post caught my attention, and (amazingly) jogged my memory about a condition that I had read about somewhere. Again, I have NO comprehension about the antibody thing, so it may have already been ruled out. I don't know. But I thought I would mention it, since I recall that it was sometimes mistaken for MS. It's called Hughes Syndrome.
http://www.medicinenet.com/antiphospholipid_syndrome/article.htm
http://www.hughes-syndrome.org/symptoms.htm
Those two sites have some information, incase it hasn't been ruled out and you were interested in looking into it.
I sure hope you get some answers, and sorry I don't understand more of the blood stuff. If I did I could possibly have saved you the time of reading this!
Good Luck, I know how much it sucks to be stuck in limbo, and not understanding what's happening with your body.
Christine
(un-dx)
Something about your post caught my attention, and (amazingly) jogged my memory about a condition that I had read about somewhere. Again, I have NO comprehension about the antibody thing, so it may have already been ruled out. I don't know. But I thought I would mention it, since I recall that it was sometimes mistaken for MS. It's called Hughes Syndrome.
http://www.medicinenet.com/antiphospholipid_syndrome/article.htm
http://www.hughes-syndrome.org/symptoms.htm
Those two sites have some information, incase it hasn't been ruled out and you were interested in looking into it.
I sure hope you get some answers, and sorry I don't understand more of the blood stuff. If I did I could possibly have saved you the time of reading this!
Good Luck, I know how much it sucks to be stuck in limbo, and not understanding what's happening with your body.
Christine
(un-dx)
thanks, deb--i really appreciate your answer! i too have thought sjogren's but the eye tear strip test a couple of years ago was fine...and i don't have the SSA/SSB/Ro antibodies. i do have a rheumi, but he doesn't know what to do with me and just passes me off to other doctors. i have moderately high titre ANA, two more unusual antiphospholipid antibodies, a sometimes elevated sed rate, and two copies of a genetic clotting factor MTHFR. i've lost my only three pregnancies, and now this neuropathy stuff....
despite the above, the neuro said i was "physically fine" and sent me for a psych eval. the psychologist said i was psychologically fine, and said the neuro's assessment was "insulting."
none of the docs i've seen seem at all concerned about the neurological symptoms, spinal pain, or edema at the base of my skull, or finding out what's happening before offering drugs. and so no, no one has seriously offered and MRI--the neuro vaguely did when this all started but dissuaded me by saying it was an expensive and probably totally unnecessary test and was unlikely to show anything (i assume because i am "crazy" and suffering from a conversion disorder), and internist, rheumatologist and hematologist all seemed to think it was a bad idea when i asked recently.
with no diagnosis, my rheumi wants to give me steroids, my internist nerve drugs, the neurologist wanted to give me antidepressants, and my hematologist thought maybe anticoagulation, except it seems like i may bleed as well as clot, based on a poor response to baby aspirin, so said no anticoagulation until i have a "proven" clotting incident. (the three early miscarriages don't count because i don't have the antiphospholipids most commonly associated with them, but more newly discovered and less researched ones. ironically, if i had one of the others, my case would automatically be considered as APS, which some argue can cause an MS-like disease but vascular in origin, and so treated with anticoagulation.)
to tell you the truth, i'm a little afraid to get the mri, because with this crew of doctors, i have the sense it might be misread, i might be misdiagnosed with a hard-to-shake label, and given the wrong medicine.
do you have any advice for me? i'm scheduled to see a new neurologist next week, but who knows what he knows about APS or sjogren's? and it seems like my rheumatologist, who he's bound to bump it back to, doesn't either. he certainly isn't very active in investigating for me.
i hope also that someone out there with APS or sjogren's and similar symptoms will read this post and let me know....
and can i ask, do you think a cervical spine injury could cause this suddenly appearing burning/tingling/numbness above my lip, or does it only affect things below? i'm not sure why it would suddenly worsen either after two years....
thanks again. it was kind of you to write!!!!
despite the above, the neuro said i was "physically fine" and sent me for a psych eval. the psychologist said i was psychologically fine, and said the neuro's assessment was "insulting."
none of the docs i've seen seem at all concerned about the neurological symptoms, spinal pain, or edema at the base of my skull, or finding out what's happening before offering drugs. and so no, no one has seriously offered and MRI--the neuro vaguely did when this all started but dissuaded me by saying it was an expensive and probably totally unnecessary test and was unlikely to show anything (i assume because i am "crazy" and suffering from a conversion disorder), and internist, rheumatologist and hematologist all seemed to think it was a bad idea when i asked recently.
with no diagnosis, my rheumi wants to give me steroids, my internist nerve drugs, the neurologist wanted to give me antidepressants, and my hematologist thought maybe anticoagulation, except it seems like i may bleed as well as clot, based on a poor response to baby aspirin, so said no anticoagulation until i have a "proven" clotting incident. (the three early miscarriages don't count because i don't have the antiphospholipids most commonly associated with them, but more newly discovered and less researched ones. ironically, if i had one of the others, my case would automatically be considered as APS, which some argue can cause an MS-like disease but vascular in origin, and so treated with anticoagulation.)
to tell you the truth, i'm a little afraid to get the mri, because with this crew of doctors, i have the sense it might be misread, i might be misdiagnosed with a hard-to-shake label, and given the wrong medicine.
do you have any advice for me? i'm scheduled to see a new neurologist next week, but who knows what he knows about APS or sjogren's? and it seems like my rheumatologist, who he's bound to bump it back to, doesn't either. he certainly isn't very active in investigating for me.
i hope also that someone out there with APS or sjogren's and similar symptoms will read this post and let me know....
and can i ask, do you think a cervical spine injury could cause this suddenly appearing burning/tingling/numbness above my lip, or does it only affect things below? i'm not sure why it would suddenly worsen either after two years....
thanks again. it was kind of you to write!!!!
Have you been to a rheumatologist? Some of your symptoms, like the dry eyes, autoantibodies, fatigue, dizziness may be due to autoimmune diseases like lupus, Sjogren's, etc. Sjogren's in particular is often related to dry eyes and sticky blood that you described. It also can accompany many other autoimmune disorders and is a great mimicker for MS. It is often very difficult to tell apart from MS.
Which autoantibodies do you have? High ANA titers or rheumatoid factor levels are very often associated with Sjogren's and sometimes even go over several thousand.
Some of your symptoms sound rheumatological and some neurological. Because symptoms of rheumatological and neurological disease often overlap with one another, it's really hard to say, based on just your symptoms, what it could be. Many rheumatological diseases like Sjogren's and lupus can affect the central nervous system. And some, like Sjogren's can even cause white matter lesions in the brain.
I don't have any idea what the swelling at the bottom of your skull is. What did your neuro say about this? He should have addressed this with you. Did he do an MRI or an lumbar puncture? If an MRI was done of the cervical area, maybe this would show why the top of your cervical spine is swelling like that.
I have MS, but I also have protruding discs in the top of the cervical spine which is probably causing the shooting pains and zapping that you are talking about. Have you had an accident that may have injured this area? I never had an accident, but have the protruding discs in my neck. It also causes pain in my neck and difficulty with turning my head.
MS is a possibility, with some of the symptoms you are describing, but there are many, many things that can cause sensory and neurological problems. It may take a very, very good specialist to sort things out for you.
Deb
Which autoantibodies do you have? High ANA titers or rheumatoid factor levels are very often associated with Sjogren's and sometimes even go over several thousand.
Some of your symptoms sound rheumatological and some neurological. Because symptoms of rheumatological and neurological disease often overlap with one another, it's really hard to say, based on just your symptoms, what it could be. Many rheumatological diseases like Sjogren's and lupus can affect the central nervous system. And some, like Sjogren's can even cause white matter lesions in the brain.
I don't have any idea what the swelling at the bottom of your skull is. What did your neuro say about this? He should have addressed this with you. Did he do an MRI or an lumbar puncture? If an MRI was done of the cervical area, maybe this would show why the top of your cervical spine is swelling like that.
I have MS, but I also have protruding discs in the top of the cervical spine which is probably causing the shooting pains and zapping that you are talking about. Have you had an accident that may have injured this area? I never had an accident, but have the protruding discs in my neck. It also causes pain in my neck and difficulty with turning my head.
MS is a possibility, with some of the symptoms you are describing, but there are many, many things that can cause sensory and neurological problems. It may take a very, very good specialist to sort things out for you.
Deb
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