Aa
10 years with weird mild symptoms - now paresthesias
Hi,
I'm having hard time getting any diagnosis, other than migraine and I would really appreciate any ideas how to continue. I'm posting this to neurology forum since most of my problems seem to be related that.
-- background --
Starting from 2003 I've experienced brief flashes / dark spots in my vision that appeared when blinking. Also closely spaced vertical lines (eg. bookshelf) seemed to buzz weirdly. I went to opthamologist couple times after that and they didn't found anything wrong with my eyes. Eventually I was sent to neurologist who suspected this to be migraine related (no major headaches though). Around same time I started to get these sudden fatigue attacks. Couple times a month (at most) I would suddenly lose all energy and had to take short nap, during which I would feel like being in mild fewer. After 1-2 hours I would wake up feeling normal.
Around 2005 I started to be constantly tired. I also started to experience air hunger (dyspnea) and constantly yawning. Went to doctor again, bloodwork, sleep apnea monitoring test and eventually full night sleep in the lab. Nothing was found. Many drugs have been tried for these. Maintaining stable sleep rhythm and melatonin have proved to be best medicine, almost completely eliminating tiredness but dyspnea remains today although not so much as in the beginning.
I think it was something around 2006 when I had this weird raised sore red nodule in my elbow, about pen eraser in size and skin peeling off in the edges. I went to dermatologist who asked if I had similar around other joints (nope) and told me to come back for blood work if I develop them. I never knew what condition he had in mind, I'm reminded of this because I now have similar but a lot smaller in inner surface of elbow joint for a week or so ... related?
2007 I was once again sent to neurologist who still suspected migraine but eventually gave me option for head MRI to clear my mind from any serious suspicions (I was thinking along MS and tumors). Head MRI was completely normal. Few migraine prevention medicines were tried again without success.
-- worry some symptoms emerge --
2008 came with a more worrying symptom. I started to have problems initiating swallowing (dysphagia?). This came without any warning and caused me great deal of anxiety and weight loss. Visit to general doctor escalated to neurologist once again. He sent me to gastroenterologist who checked my stomach (I have GERD) and did swallowing pressure test which I think was complete waste of time since the problem was not in esophagus but rather initiating the swallowing. I'm not sure if this was caused by anxiety following a choking episode or not, I think I still need to swallow more carefully or I get food in my throat without normal swallowing reflex.
And to this present year ...
January of 2011 I started to have constant dizziness. I would describe it being very similar to having couple of beers. I have chronic back problems so that was first guess .. muscle relaxants, massage and manipulation treatments were not successful. Trip to neurologist again who made basic testing and suspected migraine (different neurologist, but seems to be their favorite answer). Yet another migraine preventative medicine (Candesartan) was tried and I ate it for couple of weeks until I was suddenly starting to develop altered sensation & tingling in my left hand and feet. Finer textures like fabrics didn't feel right anymore.
I was prescribed Xanor since my doc was starting to think that all of this was caused by anxiety and I was certainly having a lot of anxiety because of these symptoms. It helped quite a bit for anxiety, but the physical symptoms were unchanged.
When this tingling started I was also having some toe-joint related pain in left feet, walking even short distances caused joint pain when toes are bent backwards. That has now mostly stopped. Also my left calf muscle became sore like after exercise but there isn't any weakness, stiffness or palpable differences in the leg.
Unfortunately paresthesias continued to develop, tingling moved around in my left hand, mostly in fingertips. Small areas, pulsing or waving on and off. I also developed sunburn type of pain. It mainly affects hands, shoulders and head (mostly forehead) but occasionally I get these shorter more intense burning in other areas too.
Tingling sensations much milder than in left hand have now spread to soles of both feet, right hand (very mild), face, trunk and even mouth occasionally. If an area starts to tingle constantly it never seems to completely leave from that spot. It may stop for a while though. Recently I've been having vibration feeling in bottoms of both feet. Today both of my leg bottoms seem to tingle most. This progression has happened during a course of two months.
What really got me worried about MS again when I noticed that sometimes bending neck forward (even slightly) initiated these tingling sensations and I was aware something like this is Lhermitte's sign. Also when looking MS symptom lists all of my past symptoms were mentioned being usual with MS.
I was re-sent to neurologist again, who re-did some tests and finally sent me to head and spinal MRI. I haven't yet heard her comments on that one but according to the radiologist it was normal and no signs of demyelination. So probably not MS after all.
But if not that, what then? I'm really worried because paresthesia is constantly conquering new areas and doesn't leave old ones completely and sensation seems to be slightly abnormal on those areas.
What other diagnostic tools should I try to push forwards? I'm pretty sure docs are now labeling all of my symptoms under anxiety / conversion syndrome. I certainly have had anxiety during these years, but I would argue that it has always followed some physical symptom that causes me to apparently over worry it.
Neuropathies? Lupus? Lyme? Fibro? Anxiety? Vascular diseases? Or is it just some weird migraine without headache and symptoms are almost constantly on.
I'm having hard time getting any diagnosis, other than migraine and I would really appreciate any ideas how to continue. I'm posting this to neurology forum since most of my problems seem to be related that.
-- background --
Starting from 2003 I've experienced brief flashes / dark spots in my vision that appeared when blinking. Also closely spaced vertical lines (eg. bookshelf) seemed to buzz weirdly. I went to opthamologist couple times after that and they didn't found anything wrong with my eyes. Eventually I was sent to neurologist who suspected this to be migraine related (no major headaches though). Around same time I started to get these sudden fatigue attacks. Couple times a month (at most) I would suddenly lose all energy and had to take short nap, during which I would feel like being in mild fewer. After 1-2 hours I would wake up feeling normal.
Around 2005 I started to be constantly tired. I also started to experience air hunger (dyspnea) and constantly yawning. Went to doctor again, bloodwork, sleep apnea monitoring test and eventually full night sleep in the lab. Nothing was found. Many drugs have been tried for these. Maintaining stable sleep rhythm and melatonin have proved to be best medicine, almost completely eliminating tiredness but dyspnea remains today although not so much as in the beginning.
I think it was something around 2006 when I had this weird raised sore red nodule in my elbow, about pen eraser in size and skin peeling off in the edges. I went to dermatologist who asked if I had similar around other joints (nope) and told me to come back for blood work if I develop them. I never knew what condition he had in mind, I'm reminded of this because I now have similar but a lot smaller in inner surface of elbow joint for a week or so ... related?
2007 I was once again sent to neurologist who still suspected migraine but eventually gave me option for head MRI to clear my mind from any serious suspicions (I was thinking along MS and tumors). Head MRI was completely normal. Few migraine prevention medicines were tried again without success.
-- worry some symptoms emerge --
2008 came with a more worrying symptom. I started to have problems initiating swallowing (dysphagia?). This came without any warning and caused me great deal of anxiety and weight loss. Visit to general doctor escalated to neurologist once again. He sent me to gastroenterologist who checked my stomach (I have GERD) and did swallowing pressure test which I think was complete waste of time since the problem was not in esophagus but rather initiating the swallowing. I'm not sure if this was caused by anxiety following a choking episode or not, I think I still need to swallow more carefully or I get food in my throat without normal swallowing reflex.
And to this present year ...
January of 2011 I started to have constant dizziness. I would describe it being very similar to having couple of beers. I have chronic back problems so that was first guess .. muscle relaxants, massage and manipulation treatments were not successful. Trip to neurologist again who made basic testing and suspected migraine (different neurologist, but seems to be their favorite answer). Yet another migraine preventative medicine (Candesartan) was tried and I ate it for couple of weeks until I was suddenly starting to develop altered sensation & tingling in my left hand and feet. Finer textures like fabrics didn't feel right anymore.
I was prescribed Xanor since my doc was starting to think that all of this was caused by anxiety and I was certainly having a lot of anxiety because of these symptoms. It helped quite a bit for anxiety, but the physical symptoms were unchanged.
When this tingling started I was also having some toe-joint related pain in left feet, walking even short distances caused joint pain when toes are bent backwards. That has now mostly stopped. Also my left calf muscle became sore like after exercise but there isn't any weakness, stiffness or palpable differences in the leg.
Unfortunately paresthesias continued to develop, tingling moved around in my left hand, mostly in fingertips. Small areas, pulsing or waving on and off. I also developed sunburn type of pain. It mainly affects hands, shoulders and head (mostly forehead) but occasionally I get these shorter more intense burning in other areas too.
Tingling sensations much milder than in left hand have now spread to soles of both feet, right hand (very mild), face, trunk and even mouth occasionally. If an area starts to tingle constantly it never seems to completely leave from that spot. It may stop for a while though. Recently I've been having vibration feeling in bottoms of both feet. Today both of my leg bottoms seem to tingle most. This progression has happened during a course of two months.
What really got me worried about MS again when I noticed that sometimes bending neck forward (even slightly) initiated these tingling sensations and I was aware something like this is Lhermitte's sign. Also when looking MS symptom lists all of my past symptoms were mentioned being usual with MS.
I was re-sent to neurologist again, who re-did some tests and finally sent me to head and spinal MRI. I haven't yet heard her comments on that one but according to the radiologist it was normal and no signs of demyelination. So probably not MS after all.
But if not that, what then? I'm really worried because paresthesia is constantly conquering new areas and doesn't leave old ones completely and sensation seems to be slightly abnormal on those areas.
What other diagnostic tools should I try to push forwards? I'm pretty sure docs are now labeling all of my symptoms under anxiety / conversion syndrome. I certainly have had anxiety during these years, but I would argue that it has always followed some physical symptom that causes me to apparently over worry it.
Neuropathies? Lupus? Lyme? Fibro? Anxiety? Vascular diseases? Or is it just some weird migraine without headache and symptoms are almost constantly on.
Since I now have two clean MRI's from 2007 and last week my neurologist is very reluctant to investigate CSF (for example) based on her previous comments. I'll have to ask about EP tests (SEP especially since I have mostly sensation symptoms). I don't have any loss off strength, balance, coordination or tremors.
Based on my knowledge it would be very unusual to have MS and zero lesions in nervous system after so many years of symptoms. Maybe then if one considers latest symptoms as start of MS, but that's a bit stretch since it doesn't explain earlier symptoms at all ..
Maybe I'll know more once I have talked with her in few days.
Based on my knowledge it would be very unusual to have MS and zero lesions in nervous system after so many years of symptoms. Maybe then if one considers latest symptoms as start of MS, but that's a bit stretch since it doesn't explain earlier symptoms at all ..
Maybe I'll know more once I have talked with her in few days.
MEDICAL PROFESSIONAL
Hi there. I would still like you to be investigated for Multiple sclerosis again. MS is a chronic demyelinating disorder where the disease phase is characterized by active phase and remissions. It has multiple symptoms and signs and is a diagnosis of exclusion. The symptoms of multiple sclerosis are loss of balance, muscle spasms, numbness in any area, problems with walking and coordination, tremors in one or more arms and legs. Bowel and bladder symptoms include frequency of micturition, urine leakage, eye symptoms like double vision uncontrollable rapid eye movements, facial pain, painful muscle spasms, tingling, burning in arms or legs, depression, dizziness, hearing loss, fatigue etc. The treatment is essentially limited to symptomatic therapy so the course of action would not change much whether MS has been diagnosed or not. Apart from clinical neurological examination, MRI shows MS as paler areas of demyelination, two different episodes of demyelination separated by one month in at least two different brain locations. Spinal tap is done and CSF electrophoresis reveals oligoclonal bands suggestive of immune activity, which is suggestive but not diagnostic of MS. Demyelinating neurons, transmit nerve signals slower than non-demyelinated ones and can be detected with EP tests. These are visual evoked potentials, brain stem auditory evoked response, and somatosensory evoked potential. Slower nerve responses in any one of these is not confirmatory of MS but can be used to complement diagnosis along with a neurological examination, medical history and an MRI in addition, a spinal tap. Therefore, it would be prudent to consult your neurologist with these concerns. Hope this helps. Take care.
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