Aa
MS/Lupus?????
Hi
I'm a 43 year old female and I have had MS type symptoms for over a year. I had a clear LP, my brain MRI shows two hyperintenstities, venous angioma, spinal fluid, and scar tissue. My bloodwork shows no signs of anything. I was diagnosed with BFS ( constant muscle spasms and numbness),complicated migraines, also was told I had an aneuyrsm then told I didn't was told I had MS then told I didn't now told I could possibly have MS. My question is my BUN level was slightly off and I do have joint pain from time to time. Could it possibly be Lupus. When I go into a tanning booth I break out in hives. There is usually only a couple. I have hypothyroidism whichis under control, high blood pressure which is under control and GERD which is under control. I have recently had a few episodes where my speech gets strange either I cant think of simple words or nonsense comes out. The neuro thinks its stress. Could it be mini strokes and is there a test that would tell me if I were having TIAs because he didn't order any bloodwork until April. But my question is since my kidneys are off, my joints pain and are stiff and the "mini stroke" episodes should I see a rheumotologist to see if this is Lupus or should I stay with the neuro and pursue the MS option. I was tested for Lupus and the ANA and SED rate came back high just not high enough that was last year. THank you for your time.
I'm a 43 year old female and I have had MS type symptoms for over a year. I had a clear LP, my brain MRI shows two hyperintenstities, venous angioma, spinal fluid, and scar tissue. My bloodwork shows no signs of anything. I was diagnosed with BFS ( constant muscle spasms and numbness),complicated migraines, also was told I had an aneuyrsm then told I didn't was told I had MS then told I didn't now told I could possibly have MS. My question is my BUN level was slightly off and I do have joint pain from time to time. Could it possibly be Lupus. When I go into a tanning booth I break out in hives. There is usually only a couple. I have hypothyroidism whichis under control, high blood pressure which is under control and GERD which is under control. I have recently had a few episodes where my speech gets strange either I cant think of simple words or nonsense comes out. The neuro thinks its stress. Could it be mini strokes and is there a test that would tell me if I were having TIAs because he didn't order any bloodwork until April. But my question is since my kidneys are off, my joints pain and are stiff and the "mini stroke" episodes should I see a rheumotologist to see if this is Lupus or should I stay with the neuro and pursue the MS option. I was tested for Lupus and the ANA and SED rate came back high just not high enough that was last year. THank you for your time.
Hello. Sorry for the lenghty post, but with so many things wrong, I must mention them all for anyone to get a full picture. lol
I am a 40 year old female who does have Lupus-SLE, and...Fibro, OA, APS, Meralgia Paresthecia, Hypertension, Raynauds, Sjogrens, Corneal Erosion Syndrome and various other problems/syndromes/etc. Let me say in rpely to an above comment, that Lupus is NOT easy to DX via blood tests and there is, as of yet, NO single blood test that will DX or rule out Lupus. The main one used is the ANA and that is NOT a reliable test, to only go by. There are many factors and 'criteria' to consider as well...as is my case.
I am what's known as 'Negative ANA Lupus' meaning I have never tested ANA pos for Lupus...BUT a DX was given finally, based on meeting the 'criteria' and the fact of testing APS Pos.-its a pretty common thing to test ANA, for those with postive APS and Lupus symptoms.
I am currently seeing an ENT due to having ear/hearing-tinnitus/balance problems for the past 3 weeks. Went yesterday for the first visit-hearing checks out normal, ears are clear of any signs of infection, fluid, etc-now schedualed for an ENG and some other test on 04-10-07. During exam, doc made me do the 'closed eyes/open eyes' walk a straight line and the marching in place as well. During all-esp. when eyes were closed, I felt like I was falling to the left side-doc noted this as well, as it was apparant to her, and she asked me which way I 'felt' like I was falling-and it was always mostly to the left.
I have suffered dizziness for a long time, but never this bad-previously tested for Meniere's about 4 years ago-was negative for it-ruled out via several ear/balance tests.
Also, about 4-5 years ago, my neuro I was seeing then(have since moved too far) I was given an MRI to check for MS lesions, due to symptoms I was having back then-no lesions found, but doc said they could 'show up at a later time' and mentioned its not all that uncommon for a person with SLE to also have MS-have since found that to be true via knowing other 'Lupies'.
To shorten this, I will post a list of current and ongoing symptoms:
Weakness
Unsteadiness-feel like I'm going to fall over-always grabbing onto things.
Much more fatigued lately-Recent Lupus blood workups show no activity at this time. No energy.
Pressure in head/right ear
Dizziness/unsteadiness
Noises in right ear-left as well, but much more evident in right ear-varies from high-pitched tones, buzzing, humming.
Numbness of facial area-right side-temple area-comes and goes.
Hearing loss R ear-better now, but very apparant last week-again, no signs of ear infection or visable inner-ear problems to the ENT.
Symptoms I've had for awhile now that 'could' possibly be related:
Clicking in LEFT ear-been seen by a few ENTs for this-none know what it is-its basically, like a 'beat' to every syllable I speak! Comes and goes, for several years now. The only way to describe it, is to tell someone to put their palm over their ear, then tap with one finger on the back of that hand...THAT'S what I hear in my ear!!!
Its maddening when its really active! I've been tested for many things by ENTs because of this-its a mystery to them. lol
Can't handle loud noises or too much background noise.
Cognitive functions are worsening-garble my words, cna't get words out, can't think of, or remember words, short-term memory getting worse-I know its a symptom of Lupus, but as I said-no current Lupus activity.
Tingling sensations in arms, legs, hands, feet.
AND a WEIRD one-when I sneeze, my arms tingle from my shoulders to my fingertips!!! Been happening for a couple years now.
Another weird one...lol...hard to explain, but basically, lets say I have an itch on my abdomen area...I scratch it...and feel strange tingling sensations down my legs!! Usually the leg on the side I scratch, but sometimes both.
Legs feel 'tired' heavy. Again, a weird one here...but sometimes, when lying in bed, its like I have no idea 'WHERE' a certain body part is at the time!! Itakes me a moment to think about it, figure it out, feel where it is...etc...like my arm for example...I'll be lying there and all of a sudden think..."Is my arm across my abdomen...or not?!" And I have to check to know for sure!!!!
Eyes: Having lots of 'floaters' lately-more than my usual, and double vision at times.
Flashing lights if I move my head too fast or even when eyes are closed and I move my head.
Have one pupil that for years, is larger than the other almost all the time.
LOTS of muscle spasms and twitching all over body-much more often than usual!
Sudden shock-like pains in head, limbs, etc-out of the blue, they just hit and then are gone, most annoying ones are in head and behind ears. Sometimes happens just from turning my head...but those feel a bit different. Not quite like sudden shocks, but duller electrical sensations.
Mentioned the nerve damage in right thigh earlier-old neuro said after tests, that its MP.
Have to wear wrist braces at night because hands/arms go very tingly, numb-to a painful point-was tested by same neuro for Carpal Tunnel-it was negative. Right hand/arm worse than left, but left is starting up again now.
Weak bladder-can leak upon coughing, sneezing, laughing too hard and cna't hold urine like I use to be able to. Only leaking but enough to always need to wear shields, just in case. happens at least once or twice a day.
Nausea-usually when I am real dizzy, but its also happening more often on its own. NOT pregnant-had tubes tied years ago. lol
Oh just remembered this one too...the Shaking! My hands shake like when holding a book to read, or doing simple tasks, etc.
IBS symptoms/problems.
Severe heatburn problems-GERD has been mentioned.
Lots of pain behind left knee-not in the kneecap area-feels more like muscular pain-been like this for several weeks now-don't think its the OA, because of where it is and type of pain. Should also mention that on this same leg, my calf is markedly bigger than the right one! had doppler and other tests, didn't show anything. I know Cardizem can do that...but it usually affects both legs! Also, for about 4 weeks, a few months back, I had very obvious pitting edema in the same calf and foot! Hense the doppler, which again, was normal findings! Its gone down now, but has come back and gone again now and then. i don't use lots of salt at all and really don't eat salty foods, so cardio doesn't believe its from sodium, because again, it would be both legs affected. Another mystery in my mysterious health saga.
Oh and another one I remembered-this is taking awhile to remember it all and type it! lol Now I forgot it. lol!! Oh yeah, my voice goes hoarse MANY times a week!! Usually, if I've been talking a lot but sometimes, its just hoarse! Was told year ago, by ENT, that its nodules on my vocal choards from the Lupus. (they always say EVERYTHING is from the LUPUS and its maddening! lol)
In regards to the Raynauds symptoms...lately, my hands and feet are even colder than normal-which is usually cold! I get cold everywhere!
Sometimes, its just a quick 'cold feeling' in various parts of my body-out of the blue, some area will just feel cold! Could be a spot on a leg, or abdomen, or anywhere.
Then, on the opposite side...when its too hot, I cannot get comfortable! It goes from one extreme to the other.
Sleeping problems-even when totally exhausted, which is OFTEN, i still can't sleep!! Was put on Lunesta, but OMG, had to stop because of the horrible aftertatse side effect!!! YUK! Then tried Ambien-stopped working after about 3 weeks. have to keep getting up at night-just to get up!!
That's all I can remember now. lol Oh and as far as meds I'm currently on,
here's the list:
Plaquenil 200 mgs 2x a day
Etdolac 500 mgs 2 xs a day
Cardizem 240 mgs 1x a day
Elavil 25 mgs 1x a day
Elavil 50 mgs 1x a day
Xanax 0.25 mgs 2xs a day-for Anxiety/anxiety attacks
Flexeril 10 mgs I only take half 1 x a day(5 mgs) due to 10 mgs knocking me out!
Ultracet for OA pain
Ecotrin-81 mgs 1 x a day for the APS to thin my blood.
Well, so much for shortening this. lol But, its so much to cover to fill people in and with diseases, such as I have, you NEVER KNOW what is from WHAT! lol
Sooooooo...what is your opionion on all this? Could the neuro 4 years back be right and MS can't be ruled out because lesions didn't show up back then??? I've heard that lots of people with a DX of MS, first see an ENT because of hearing/ear/Tinnitus problems!!! And, what made me post this here is the fact that I read in archives here at this very site, where several people spoke of a STRANGE CLICKING SOUND IN ONE EAR!!! Which really caught my eye, because of my unknown and odd ear problem in my left ear!!!
I hate having to wait for these other ear tests till April 10'th, but that's when they had an opening till then!! Should I, in the meantime, make an appt. with my neuro too!!??
I appreciate you taking the time to read all this and would appreciate any input here!
Thanks!
Cathy
I am a 40 year old female who does have Lupus-SLE, and...Fibro, OA, APS, Meralgia Paresthecia, Hypertension, Raynauds, Sjogrens, Corneal Erosion Syndrome and various other problems/syndromes/etc. Let me say in rpely to an above comment, that Lupus is NOT easy to DX via blood tests and there is, as of yet, NO single blood test that will DX or rule out Lupus. The main one used is the ANA and that is NOT a reliable test, to only go by. There are many factors and 'criteria' to consider as well...as is my case.
I am what's known as 'Negative ANA Lupus' meaning I have never tested ANA pos for Lupus...BUT a DX was given finally, based on meeting the 'criteria' and the fact of testing APS Pos.-its a pretty common thing to test ANA, for those with postive APS and Lupus symptoms.
I am currently seeing an ENT due to having ear/hearing-tinnitus/balance problems for the past 3 weeks. Went yesterday for the first visit-hearing checks out normal, ears are clear of any signs of infection, fluid, etc-now schedualed for an ENG and some other test on 04-10-07. During exam, doc made me do the 'closed eyes/open eyes' walk a straight line and the marching in place as well. During all-esp. when eyes were closed, I felt like I was falling to the left side-doc noted this as well, as it was apparant to her, and she asked me which way I 'felt' like I was falling-and it was always mostly to the left.
I have suffered dizziness for a long time, but never this bad-previously tested for Meniere's about 4 years ago-was negative for it-ruled out via several ear/balance tests.
Also, about 4-5 years ago, my neuro I was seeing then(have since moved too far) I was given an MRI to check for MS lesions, due to symptoms I was having back then-no lesions found, but doc said they could 'show up at a later time' and mentioned its not all that uncommon for a person with SLE to also have MS-have since found that to be true via knowing other 'Lupies'.
To shorten this, I will post a list of current and ongoing symptoms:
Weakness
Unsteadiness-feel like I'm going to fall over-always grabbing onto things.
Much more fatigued lately-Recent Lupus blood workups show no activity at this time. No energy.
Pressure in head/right ear
Dizziness/unsteadiness
Noises in right ear-left as well, but much more evident in right ear-varies from high-pitched tones, buzzing, humming.
Numbness of facial area-right side-temple area-comes and goes.
Hearing loss R ear-better now, but very apparant last week-again, no signs of ear infection or visable inner-ear problems to the ENT.
Symptoms I've had for awhile now that 'could' possibly be related:
Clicking in LEFT ear-been seen by a few ENTs for this-none know what it is-its basically, like a 'beat' to every syllable I speak! Comes and goes, for several years now. The only way to describe it, is to tell someone to put their palm over their ear, then tap with one finger on the back of that hand...THAT'S what I hear in my ear!!!
Its maddening when its really active! I've been tested for many things by ENTs because of this-its a mystery to them. lol
Can't handle loud noises or too much background noise.
Cognitive functions are worsening-garble my words, cna't get words out, can't think of, or remember words, short-term memory getting worse-I know its a symptom of Lupus, but as I said-no current Lupus activity.
Tingling sensations in arms, legs, hands, feet.
AND a WEIRD one-when I sneeze, my arms tingle from my shoulders to my fingertips!!! Been happening for a couple years now.
Another weird one...lol...hard to explain, but basically, lets say I have an itch on my abdomen area...I scratch it...and feel strange tingling sensations down my legs!! Usually the leg on the side I scratch, but sometimes both.
Legs feel 'tired' heavy. Again, a weird one here...but sometimes, when lying in bed, its like I have no idea 'WHERE' a certain body part is at the time!! Itakes me a moment to think about it, figure it out, feel where it is...etc...like my arm for example...I'll be lying there and all of a sudden think..."Is my arm across my abdomen...or not?!" And I have to check to know for sure!!!!
Eyes: Having lots of 'floaters' lately-more than my usual, and double vision at times.
Flashing lights if I move my head too fast or even when eyes are closed and I move my head.
Have one pupil that for years, is larger than the other almost all the time.
LOTS of muscle spasms and twitching all over body-much more often than usual!
Sudden shock-like pains in head, limbs, etc-out of the blue, they just hit and then are gone, most annoying ones are in head and behind ears. Sometimes happens just from turning my head...but those feel a bit different. Not quite like sudden shocks, but duller electrical sensations.
Mentioned the nerve damage in right thigh earlier-old neuro said after tests, that its MP.
Have to wear wrist braces at night because hands/arms go very tingly, numb-to a painful point-was tested by same neuro for Carpal Tunnel-it was negative. Right hand/arm worse than left, but left is starting up again now.
Weak bladder-can leak upon coughing, sneezing, laughing too hard and cna't hold urine like I use to be able to. Only leaking but enough to always need to wear shields, just in case. happens at least once or twice a day.
Nausea-usually when I am real dizzy, but its also happening more often on its own. NOT pregnant-had tubes tied years ago. lol
Oh just remembered this one too...the Shaking! My hands shake like when holding a book to read, or doing simple tasks, etc.
IBS symptoms/problems.
Severe heatburn problems-GERD has been mentioned.
Lots of pain behind left knee-not in the kneecap area-feels more like muscular pain-been like this for several weeks now-don't think its the OA, because of where it is and type of pain. Should also mention that on this same leg, my calf is markedly bigger than the right one! had doppler and other tests, didn't show anything. I know Cardizem can do that...but it usually affects both legs! Also, for about 4 weeks, a few months back, I had very obvious pitting edema in the same calf and foot! Hense the doppler, which again, was normal findings! Its gone down now, but has come back and gone again now and then. i don't use lots of salt at all and really don't eat salty foods, so cardio doesn't believe its from sodium, because again, it would be both legs affected. Another mystery in my mysterious health saga.
Oh and another one I remembered-this is taking awhile to remember it all and type it! lol Now I forgot it. lol!! Oh yeah, my voice goes hoarse MANY times a week!! Usually, if I've been talking a lot but sometimes, its just hoarse! Was told year ago, by ENT, that its nodules on my vocal choards from the Lupus. (they always say EVERYTHING is from the LUPUS and its maddening! lol)
In regards to the Raynauds symptoms...lately, my hands and feet are even colder than normal-which is usually cold! I get cold everywhere!
Sometimes, its just a quick 'cold feeling' in various parts of my body-out of the blue, some area will just feel cold! Could be a spot on a leg, or abdomen, or anywhere.
Then, on the opposite side...when its too hot, I cannot get comfortable! It goes from one extreme to the other.
Sleeping problems-even when totally exhausted, which is OFTEN, i still can't sleep!! Was put on Lunesta, but OMG, had to stop because of the horrible aftertatse side effect!!! YUK! Then tried Ambien-stopped working after about 3 weeks. have to keep getting up at night-just to get up!!
That's all I can remember now. lol Oh and as far as meds I'm currently on,
here's the list:
Plaquenil 200 mgs 2x a day
Etdolac 500 mgs 2 xs a day
Cardizem 240 mgs 1x a day
Elavil 25 mgs 1x a day
Elavil 50 mgs 1x a day
Xanax 0.25 mgs 2xs a day-for Anxiety/anxiety attacks
Flexeril 10 mgs I only take half 1 x a day(5 mgs) due to 10 mgs knocking me out!
Ultracet for OA pain
Ecotrin-81 mgs 1 x a day for the APS to thin my blood.
Well, so much for shortening this. lol But, its so much to cover to fill people in and with diseases, such as I have, you NEVER KNOW what is from WHAT! lol
Sooooooo...what is your opionion on all this? Could the neuro 4 years back be right and MS can't be ruled out because lesions didn't show up back then??? I've heard that lots of people with a DX of MS, first see an ENT because of hearing/ear/Tinnitus problems!!! And, what made me post this here is the fact that I read in archives here at this very site, where several people spoke of a STRANGE CLICKING SOUND IN ONE EAR!!! Which really caught my eye, because of my unknown and odd ear problem in my left ear!!!
I hate having to wait for these other ear tests till April 10'th, but that's when they had an opening till then!! Should I, in the meantime, make an appt. with my neuro too!!??
I appreciate you taking the time to read all this and would appreciate any input here!
Thanks!
Cathy
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms and story that you present are complex and there is much data that I do not have. Given the two hyperintensities on your MRI and the multiple symptoms that you describe I would suggest a full workup for mutliple sclerosis (MS). I would suggest a repeat MRI of the brain and cervical spine with GAD contrast, lumbar puncture with (IgG index and oligoclonal bands-unless the full panel of this was done on your previous lumbar puncture), and visual evoked potentials (to look for past evidence of optic neuritis)/ somatosensory evoked potentials (to look for functional defecits in your spinal cord).
As far as the 'mini-stroke' episodes, their is no test for TIAs, but they are evaluated by MRI to look for evidence of stroke and if nothing is found and the episode completely resolves, but the event was thought to be vascular it is called a TIA (transient ischemic attack). The traditional definition of a TIA is a focal 'stroke like' symptoms that resolves within 24 hours. However many such episodes will show up on modern MRIs as a stroke. The 'more modern' time frame for TIAs is more on the order of 20 minutes to 1.5 hours. Although there is no test to positively diagnose a TIA, I would suggest the MRI with MRA (magnetic resonance angiogram) to evaluate for strokes and any constricted vessels.
Your concern about Lupus is unlikely to be related to the symptoms that you have described, but I would recommend that you see a rheumatologist to further decipher this issue. A first step would be to test for antibodies against some of the common antigens including double stranded DNA, anti-smith ab, anti-ro, anti-la, etc. Your concern over your kidney function should also be addressed, and I would defer the workup for possible Lupus and Lupus related kidney disease to your rheumatologist.
I hope this has been helpful.
The symptoms and story that you present are complex and there is much data that I do not have. Given the two hyperintensities on your MRI and the multiple symptoms that you describe I would suggest a full workup for mutliple sclerosis (MS). I would suggest a repeat MRI of the brain and cervical spine with GAD contrast, lumbar puncture with (IgG index and oligoclonal bands-unless the full panel of this was done on your previous lumbar puncture), and visual evoked potentials (to look for past evidence of optic neuritis)/ somatosensory evoked potentials (to look for functional defecits in your spinal cord).
As far as the 'mini-stroke' episodes, their is no test for TIAs, but they are evaluated by MRI to look for evidence of stroke and if nothing is found and the episode completely resolves, but the event was thought to be vascular it is called a TIA (transient ischemic attack). The traditional definition of a TIA is a focal 'stroke like' symptoms that resolves within 24 hours. However many such episodes will show up on modern MRIs as a stroke. The 'more modern' time frame for TIAs is more on the order of 20 minutes to 1.5 hours. Although there is no test to positively diagnose a TIA, I would suggest the MRI with MRA (magnetic resonance angiogram) to evaluate for strokes and any constricted vessels.
Your concern about Lupus is unlikely to be related to the symptoms that you have described, but I would recommend that you see a rheumatologist to further decipher this issue. A first step would be to test for antibodies against some of the common antigens including double stranded DNA, anti-smith ab, anti-ro, anti-la, etc. Your concern over your kidney function should also be addressed, and I would defer the workup for possible Lupus and Lupus related kidney disease to your rheumatologist.
I hope this has been helpful.
Hi ,
Your husband sounds very much like lyme disease to me. I have had very similar symptoms and was dx with lyme five months ago.
If you want any information on lyme just email me.
***@****
Good luck.
Lesley
Your husband sounds very much like lyme disease to me. I have had very similar symptoms and was dx with lyme five months ago.
If you want any information on lyme just email me.
***@****
Good luck.
Lesley
I'm not a doctor, either, but like you I've spent thousands (literally) of hours researching and from my reading it doesn't sound anything to me like lupus, MG (which I've read extensively on) or even ALS (though I've read little about that). As far as MS, I think (in the words of my own neurologist/MS specialist) that if LP as well as brain/C-spine MRI are normal than "MS can safely be ruled out." 100%?--I don't know.
I don't think myasthenia gravis causes numbness or any paresthesias for that matter. It's also not unilateral (you mentioned all on right side). Lupus would probably have caused other symptoms (if this has been going on for years now)-anemia, kidney problems, skin manifestations, rashes, hair loss, fevers, etc.
Why do you not think the diagnoses of hemiplegic migraines and fibromyalgia don't fit? Has he been put on migraine meds to see if they help? You should try to get a question in to the doctor (early morning best shot it seems in eastern time zone).
I don't think myasthenia gravis causes numbness or any paresthesias for that matter. It's also not unilateral (you mentioned all on right side). Lupus would probably have caused other symptoms (if this has been going on for years now)-anemia, kidney problems, skin manifestations, rashes, hair loss, fevers, etc.
Why do you not think the diagnoses of hemiplegic migraines and fibromyalgia don't fit? Has he been put on migraine meds to see if they help? You should try to get a question in to the doctor (early morning best shot it seems in eastern time zone).
I also posted this on another thread but can never ask too many people!
For SEVERAL years (and I can't stress the SEVERAL enough) my husband has been having bizarre neurological symptoms. They began when we were living in Texas while he was attending seminary. Things have progressed and worsed over the years and we seem to constantly get nowhere with family doc, neurologist, rheumatologist, etc. I am going to list a short summary of the issues and explain what we have been told. If anyone can point me in a direction PLEASE let me know.
1) diagnosed with Fibromyalgia because of consistent body pain
2) began having severe migraines
3) later during the time of a migraine, his right I would close and the right side of his mouth droop (just like Bell's Palsy).
4) after a while of these episodes, ENTIRE right side of body would go numb. Sometimes it will last a day, sometimes a week, sometimes MONTHS.
5) these episodes do sometimes occur immediately after ejaculation.
Family practice doctor has done CT, MRI, Carotid Artery studies, lumbar punctures, etc. All show negative for most major disease.
FP Dr says now "Hemiplegic Migraines" and it is impossible to tell when they are going to come on, cannot treat the hemiparesis once it begins, etc. Neuro says it's not that but doesn't say what it is.
My thoughts, based on HOURS of reading are: MS, Lupus, ALS, or Myesthenia Gravis. His maternal grandfather did have MG.
My husband is actually in the hospital right now with the symptoms. The doctor ordered yet ANOTHER MRI and carotid study. I found a blood test that can be done for MG so I am going to request that they do it while he is in. I will be checking this board tonight and tomorrow so if ANYONE has ANY ideas, similarities, places to begin, etc. PLEASE let me know. As my login says I am a wifeataloss!!!! We are going on 9 years of this and basically getting told NOTHING! And we haven't even used the same doctors this entire time!
For SEVERAL years (and I can't stress the SEVERAL enough) my husband has been having bizarre neurological symptoms. They began when we were living in Texas while he was attending seminary. Things have progressed and worsed over the years and we seem to constantly get nowhere with family doc, neurologist, rheumatologist, etc. I am going to list a short summary of the issues and explain what we have been told. If anyone can point me in a direction PLEASE let me know.
1) diagnosed with Fibromyalgia because of consistent body pain
2) began having severe migraines
3) later during the time of a migraine, his right I would close and the right side of his mouth droop (just like Bell's Palsy).
4) after a while of these episodes, ENTIRE right side of body would go numb. Sometimes it will last a day, sometimes a week, sometimes MONTHS.
5) these episodes do sometimes occur immediately after ejaculation.
Family practice doctor has done CT, MRI, Carotid Artery studies, lumbar punctures, etc. All show negative for most major disease.
FP Dr says now "Hemiplegic Migraines" and it is impossible to tell when they are going to come on, cannot treat the hemiparesis once it begins, etc. Neuro says it's not that but doesn't say what it is.
My thoughts, based on HOURS of reading are: MS, Lupus, ALS, or Myesthenia Gravis. His maternal grandfather did have MG.
My husband is actually in the hospital right now with the symptoms. The doctor ordered yet ANOTHER MRI and carotid study. I found a blood test that can be done for MG so I am going to request that they do it while he is in. I will be checking this board tonight and tomorrow so if ANYONE has ANY ideas, similarities, places to begin, etc. PLEASE let me know. As my login says I am a wifeataloss!!!! We are going on 9 years of this and basically getting told NOTHING! And we haven't even used the same doctors this entire time!
I'm no doctor but I would say no on ALS, it doesn't come and go. There are tests for Lupus, something would be abnormal in lab work. So I would say no to this one too if lab work is normal. Have you looked into lyme?
What are the symptoms you had to make you believe you have MS? All I could tell from what you said was muscle spasms.
I have numbness on my left side ( arms, legs, and cheeks) also left sided weakness, trigeminal neurolgia and speech problems. I was told by the neurologist that it was early MS.
I don't believe GERD is a symptom of MS, thought if I'm not mistaken it can be related to some obscure neuro problems.
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