Aa
new symptoms
A not so brief history: I was referred to a neurologist in 2001 after experiencing tremor in both thumbs/hands, sudden onset of blurred vision in one eye, and balance problems. Neuro exam found gait ataxia, tremor, left hand weakness, and optic neuritis. He ordered mri, veps, and emg to rule out MS or MG. All tests came back normal. I declined LP. DX: Essential tremor.
In 2002 routine trip to optometrist revealed a small blind spot in field of vision test. He sent me back to neurologist. An ocular MRI came back normal. Other symptoms persisted, including tingling, pins and needles in legs, vibration sensation throughout trunk occasionally.
In 2003 I had frequent falling episodes during pregnancy - after pregnancy I began seeing bright flashes of light at the edge of my field of vision, triggered by sound. Neuro noted loss of sensation on shins in addition to previous symptoms. No further testing was done, dx of essential tremor remained.
In 2006 my primary doc referred me to neuro again after another round of frequent falls, difficulty walking in extreme heat (100 plus temps), fatigue, cognitive issues and noticeable atrophy of left hand muscles. Neuro ordered cervical spine MRI, again normal. Dx of essential tremor remains.
In the past few months I've now had several episodes of difficulty w/bladder & bowel issues. My question: my neuro won't dx MS with normal mri, but keeps doing mri to 'rule it out', and has me back yearly for follow up. Is there a better way? I have several relatives with Parkinsons and one with MS, whose dx took ten years to confirm. What should be my next step?
In 2002 routine trip to optometrist revealed a small blind spot in field of vision test. He sent me back to neurologist. An ocular MRI came back normal. Other symptoms persisted, including tingling, pins and needles in legs, vibration sensation throughout trunk occasionally.
In 2003 I had frequent falling episodes during pregnancy - after pregnancy I began seeing bright flashes of light at the edge of my field of vision, triggered by sound. Neuro noted loss of sensation on shins in addition to previous symptoms. No further testing was done, dx of essential tremor remained.
In 2006 my primary doc referred me to neuro again after another round of frequent falls, difficulty walking in extreme heat (100 plus temps), fatigue, cognitive issues and noticeable atrophy of left hand muscles. Neuro ordered cervical spine MRI, again normal. Dx of essential tremor remains.
In the past few months I've now had several episodes of difficulty w/bladder & bowel issues. My question: my neuro won't dx MS with normal mri, but keeps doing mri to 'rule it out', and has me back yearly for follow up. Is there a better way? I have several relatives with Parkinsons and one with MS, whose dx took ten years to confirm. What should be my next step?
Thank you so much for putting so much thought into your response. Just to answer a few of your questions, VEP has not been repeated since 2001. Left hand atrophy has become noticeable only recently and it does affect my ability to grip. All bloodwork has been normal. EEG also ruled out MG and carpal tunnel. Brain/spine mri was done in 2001, followed by 'ocular' mri, but no additional VEP when blind spot appeared (it has since resolved). No other mris were performed until hand atrophy became apparent in 2006. It was a cervical spine mri, also normal. All mris were done w/wo contrast on 2T mri.
About my balance - I cannot walk a straight line with eyes open, and with eyes closed I do sway... I find it difficult to walk through a darkened room without losing my balance. However, the walking difficulties otherwise, have subsided. It was worse last summer than ever before... and that has resolved somewhat.
I was in my thirties when all this began... I have a second cousin diagnosed w/MS in her early fifties, after a decade of symptoms and testing... so I know it is not unusual to be in limbo. For the most part my symptoms are not debilitating, just frustrating and worrisome. However, a recent onset (lasting 2-3 days) of bowel/bladder symptoms along with a tight band sensation around my left leg was very difficult to ignore. Bowel/bladder/band sensation all resolved at the same time. That's what prompted by post a few days ago. That just seemed too ms-like to ignore. I'm set to go back to my neuro in Nov. I have been reluctant to get a second opinion... but as you so aptly pointed out, I guess it is time. Thank you again.
About my balance - I cannot walk a straight line with eyes open, and with eyes closed I do sway... I find it difficult to walk through a darkened room without losing my balance. However, the walking difficulties otherwise, have subsided. It was worse last summer than ever before... and that has resolved somewhat.
I was in my thirties when all this began... I have a second cousin diagnosed w/MS in her early fifties, after a decade of symptoms and testing... so I know it is not unusual to be in limbo. For the most part my symptoms are not debilitating, just frustrating and worrisome. However, a recent onset (lasting 2-3 days) of bowel/bladder symptoms along with a tight band sensation around my left leg was very difficult to ignore. Bowel/bladder/band sensation all resolved at the same time. That's what prompted by post a few days ago. That just seemed too ms-like to ignore. I'm set to go back to my neuro in Nov. I have been reluctant to get a second opinion... but as you so aptly pointed out, I guess it is time. Thank you again.
Hi, Welcome to the forum. I, too am sorry you're going through Diagnostic Limbo. We have sort of created a little niche for the Great Undiagnosed and MisDiagnosed here, so your story is a familiar one. I certainly hope we can help, because you present an interesting question. Before I go into each of your bout with symptoms I have an observation and a question. First we cannot diagnose anything online, but I will be discussing what you told us in the "contest of MS." It is clear to me, and I am a physician, but not a neurologist (and I am currently not in practice) that MS can exist with years of "normal MRIs." However, unless you find a very gutsy, smart and creative MS specialist you are unlikely to actually get the diagnosis of MS. My question is were all your MRI done with and without contrast?
On your first bout of symptoms, in 2001, were these the first symptoms you had had? Did they all present with the same attack (presenting pretty much together in the same period of time?) The neuro diagnosed "Optic Neuritis." How? On exam? But the VEP was negative? That's unusual, but not impossible. Has the VEP ever been repeated? Your entire presentation is classic for MS as you possibly know.
The neuro also found weakness in the left hand. This should not be caused by an Essential tremor. Is your tremor resting or intentional? (Does it occur with action or at rest?) I assume that the EMG was of the muscles of the hand. This was normal also? Has it ever been repeated? The EMG/NCS can provide details on what the cause of the damage is, especially since you have wasting now in the muscles of the hands.
The next year when they found the blank spot in your vision. The ocular MRI was normal. They also should have repeated the VEP. A Visual Evoked Response will be more sensitive to a previously, but now healed episode of ON. Were the paresthesias continual or episodic? Was your neuro exam still abnormal and were there any new deficits. Because if there were, and if there had been a distinct episode of renewal of symptoms in that year, the diagnosis of MS could have been made on the clinical basis of two attacks and damage in a different area the second time. The current diagnostic criteria allow for making the diagnosis of MS without MRI evidence. If all of your symptoms lingered, the whole thing becomes very hard to diagnose and they lean heavily on finding lesions in the brain.
Okay, 2003, new physical finding, loss of sensation on shins. With new visual symptoms VEP should have been repeated. And as suggestive as the entire previous history was the MRI of brain, c-spine and t-spine should have been repeated. Most MS specialists, in the face of VERY suggestive symptoms and physical findings will repeat the MRI at frequent intervals.
Have your reflexes always been normal? Can you stand with your feet together and eyes closed for 30 seconds without wavering badly or falling? Have your had a VidoeElectroNystagmaGram, a VNG ,to evaluate your balance? This will help show if the damage to the balance system is in the inner ear (not MS) or is central in the brainstem (poss MS).
I'm sure if you've been reading you know that the flare up of MS symptoms is actually "expected" in the several months after childbirth.
So last year, you began tolerating the heat more poorly. Is the fatigue a major deal? What kind of cognitive issues? And now your left hand is poorly usable, I would gather. The only MRI was of the spine, did they use contrast?
I count two MRIs of the head, (2001), but the one in 2002 was an "ocular" only? Usually they do the brain and full orbits, do you remember? And I count 2 of the cervical spine. Was the thoracic spine ever done?
I rehashed all of this for a couple reasons. One is to make sure I got the details. The second was to point out that the workup has not been very aggressive in the face of progressive symptoms and of progressive disability. If this is MS you are already 5 years into the disease. At this point you need, in my opinion, fresh blood. You need a second opinion, preferably by an MS Clinic who belongs to the (International) Consortium fo MS Centers.
You need a repeat MRI of the Brain, C-spine, and T-spine all done with and without contrast. If at all possible you need these to be done on the newest generation of MRI machines called the 3T (has a 3 Tesla magnet) It has a finer resolution and will pick up lesions the older machines miss, especially in the spine. These may well, along with your history and physical give you your diagnosis. If the MRIs show even one suggestive lesion, I would think you are a candidate now for Disease Modifying Drugs to slow the progression (if this is MS) down. If they want it, I would urge you to have the LP. You can request that it be done under fluoroscopy guidance by radiology. I had mine down that way and it was a breeze! Smooth and painless. I think you should have a repeat VEP anyway.
If this is MS, then HOW could the MRIs be negative all these years? Most MS Specialist will tell you that many, if not most MS lesions are still invisible to MRI. Of course, if they can't be seen they can't be used in the diagnosis. But we also know that a person (and if you want I'll introduce you to one) can have years of invisible lesions that get scarred, missed by the MRI and then reabsorbed by the body, forming little "black holes" in the brain. When the body reabsorbs enough of these, it becomes like microscopic swiss chees and eventually the brain contracts down around these empty spaces and then you have your first MRI abnormality - brain atrophy (a brain that has shrunk and loss volume). In MS brain atrophy correlates very well with disability.
The other possibility is that your MRIs have NOT been normal and that they have been misread. Sometimes neurologists rely on the radiologists and sometimes the report says "normal for age" which sometimes means that there are lesions on the brain, but that they are "normal" for you. I strongly (read that STRONGLY) disagree with this practice. Yes, lesions can form as early as the 30's by natural "aging", but I do no think that any definite lesions should EVER be dismissed as normal when the patient has a very suggestive history or physical exam. This was done to me by both the neuroradiologist and by my neurologist for two years. The "normal" lesion was a classic MS plaque and my diagnosis was delayed for that long. As soon as a real expert in the field saw it my diagnosis was made! (Of course my old, "evil" neuro also told me I was too old at 53. The diagnosis has been confirmed as young as 2 and as old as 73)
So I think you should seek a highly qualified 2nd opinion, to which you will take a fully fleshed out Timeline (our specialty) and copies of all your old MRI (the actual films or images) and reports. Also you need to have all the blood work for "mimics" of MS. That is required to make the diagnosis of MS - That there be No Better Explanation for the Patient's Problems. You should be tested by Western Blot for Lyme Disease, and a bunch of other stuff. It should have already been done.
Yes, I am always long-winded, but it is an important topic. Your a Mom. You need a better course of action than, "Suspect MS. Plan: Wait for MRI to be diagnostic."
I'm pooped now (no energy left to edit, sorry) , but we have several good threads on a lot of these topics. I can also point you to sites for finding more info or finding a good MS neuro.
I hope this helps, Quix
On your first bout of symptoms, in 2001, were these the first symptoms you had had? Did they all present with the same attack (presenting pretty much together in the same period of time?) The neuro diagnosed "Optic Neuritis." How? On exam? But the VEP was negative? That's unusual, but not impossible. Has the VEP ever been repeated? Your entire presentation is classic for MS as you possibly know.
The neuro also found weakness in the left hand. This should not be caused by an Essential tremor. Is your tremor resting or intentional? (Does it occur with action or at rest?) I assume that the EMG was of the muscles of the hand. This was normal also? Has it ever been repeated? The EMG/NCS can provide details on what the cause of the damage is, especially since you have wasting now in the muscles of the hands.
The next year when they found the blank spot in your vision. The ocular MRI was normal. They also should have repeated the VEP. A Visual Evoked Response will be more sensitive to a previously, but now healed episode of ON. Were the paresthesias continual or episodic? Was your neuro exam still abnormal and were there any new deficits. Because if there were, and if there had been a distinct episode of renewal of symptoms in that year, the diagnosis of MS could have been made on the clinical basis of two attacks and damage in a different area the second time. The current diagnostic criteria allow for making the diagnosis of MS without MRI evidence. If all of your symptoms lingered, the whole thing becomes very hard to diagnose and they lean heavily on finding lesions in the brain.
Okay, 2003, new physical finding, loss of sensation on shins. With new visual symptoms VEP should have been repeated. And as suggestive as the entire previous history was the MRI of brain, c-spine and t-spine should have been repeated. Most MS specialists, in the face of VERY suggestive symptoms and physical findings will repeat the MRI at frequent intervals.
Have your reflexes always been normal? Can you stand with your feet together and eyes closed for 30 seconds without wavering badly or falling? Have your had a VidoeElectroNystagmaGram, a VNG ,to evaluate your balance? This will help show if the damage to the balance system is in the inner ear (not MS) or is central in the brainstem (poss MS).
I'm sure if you've been reading you know that the flare up of MS symptoms is actually "expected" in the several months after childbirth.
So last year, you began tolerating the heat more poorly. Is the fatigue a major deal? What kind of cognitive issues? And now your left hand is poorly usable, I would gather. The only MRI was of the spine, did they use contrast?
I count two MRIs of the head, (2001), but the one in 2002 was an "ocular" only? Usually they do the brain and full orbits, do you remember? And I count 2 of the cervical spine. Was the thoracic spine ever done?
I rehashed all of this for a couple reasons. One is to make sure I got the details. The second was to point out that the workup has not been very aggressive in the face of progressive symptoms and of progressive disability. If this is MS you are already 5 years into the disease. At this point you need, in my opinion, fresh blood. You need a second opinion, preferably by an MS Clinic who belongs to the (International) Consortium fo MS Centers.
You need a repeat MRI of the Brain, C-spine, and T-spine all done with and without contrast. If at all possible you need these to be done on the newest generation of MRI machines called the 3T (has a 3 Tesla magnet) It has a finer resolution and will pick up lesions the older machines miss, especially in the spine. These may well, along with your history and physical give you your diagnosis. If the MRIs show even one suggestive lesion, I would think you are a candidate now for Disease Modifying Drugs to slow the progression (if this is MS) down. If they want it, I would urge you to have the LP. You can request that it be done under fluoroscopy guidance by radiology. I had mine down that way and it was a breeze! Smooth and painless. I think you should have a repeat VEP anyway.
If this is MS, then HOW could the MRIs be negative all these years? Most MS Specialist will tell you that many, if not most MS lesions are still invisible to MRI. Of course, if they can't be seen they can't be used in the diagnosis. But we also know that a person (and if you want I'll introduce you to one) can have years of invisible lesions that get scarred, missed by the MRI and then reabsorbed by the body, forming little "black holes" in the brain. When the body reabsorbs enough of these, it becomes like microscopic swiss chees and eventually the brain contracts down around these empty spaces and then you have your first MRI abnormality - brain atrophy (a brain that has shrunk and loss volume). In MS brain atrophy correlates very well with disability.
The other possibility is that your MRIs have NOT been normal and that they have been misread. Sometimes neurologists rely on the radiologists and sometimes the report says "normal for age" which sometimes means that there are lesions on the brain, but that they are "normal" for you. I strongly (read that STRONGLY) disagree with this practice. Yes, lesions can form as early as the 30's by natural "aging", but I do no think that any definite lesions should EVER be dismissed as normal when the patient has a very suggestive history or physical exam. This was done to me by both the neuroradiologist and by my neurologist for two years. The "normal" lesion was a classic MS plaque and my diagnosis was delayed for that long. As soon as a real expert in the field saw it my diagnosis was made! (Of course my old, "evil" neuro also told me I was too old at 53. The diagnosis has been confirmed as young as 2 and as old as 73)
So I think you should seek a highly qualified 2nd opinion, to which you will take a fully fleshed out Timeline (our specialty) and copies of all your old MRI (the actual films or images) and reports. Also you need to have all the blood work for "mimics" of MS. That is required to make the diagnosis of MS - That there be No Better Explanation for the Patient's Problems. You should be tested by Western Blot for Lyme Disease, and a bunch of other stuff. It should have already been done.
Yes, I am always long-winded, but it is an important topic. Your a Mom. You need a better course of action than, "Suspect MS. Plan: Wait for MRI to be diagnostic."
I'm pooped now (no energy left to edit, sorry) , but we have several good threads on a lot of these topics. I can also point you to sites for finding more info or finding a good MS neuro.
I hope this helps, Quix
Seeking a second opinion is certainly an option... I guess I am wondering what the odds might be of having MS with a consistently 'normal' mri, but consistently abnormal neuro exams. On one hand, I read a small percentage of people with MS have normal mris... yet I also read doctors who say several normal mris will rule out MS. What is the consensus here?
I am sorry you're going through this.
I am not a doctor nor do I have a dx or MS. However, I have been reading these boards for awhile and I would think you should consider the LP. If that comes back suggestive of MS and your neuro still won't dx you maybe you can go to another doc?
I hope you find your answers soon.
I am not a doctor nor do I have a dx or MS. However, I have been reading these boards for awhile and I would think you should consider the LP. If that comes back suggestive of MS and your neuro still won't dx you maybe you can go to another doc?
I hope you find your answers soon.
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