Aa
Frustrated and At My Breaking Point! Please Help?
I am a 35 year old female and I live in Maine. For the past 7 years, I've been sticken with some debilitating symptoms. It all started back in 2009 about 4-6 weeks after I have birth to one of my sons. At first, the symptoms started out as very brief visual disturbances. I would lose my peripheral vision in one eye then sometimes in both. It would last a few minutes. Then it started progressing. Sometimes I got a headache with them, sometimes I didn't. My eyes hurt a significant amount to move, but I wasn't more light sensitive.
As things progressed over the years, I went from having the brief spells with a month or two in between to having what the doctor believed was 2 petite mal seizures. After that, my health declined. They originally thought it may be post-partum onset of thyroid disease (cleared.) Diabetes (cleared). Migraines (tried about 13 different meds and they either didn't change my symptoms or they made them significant worse to the point, I couldn't move. Literally.) I saw doctor after doctor and no one could tell me what was wrong. They did an MRI of my Brain (without contrast) and it came back mild White Matter Disease and a single specific lesion located deep in the white matter of the right frontal lobe. Doctors told me everything was "normal with no findings."
I had periods of remission so to speak, but now, they were getting shorter and I had multiple symptoms popping up with every time I started having symptoms again. I found a doctor who thought it may be Lyme Disease. Screener came back positive. Western Blots came back negative. She referred me to a Rheumatologist in January of this year. He believed I may have Lupus, Sjogren's Syndrome, Vasculitis, and Rheumatoid Arthritis. He did extensive blood and urine tests. He said they all came back fine and he could find anything that could be explained by labs. He ruled out Lyme Disease and all the other diagnoses listed. He agreed to try me on Lyrica 75mg in the morning and 75mg at night just in case it's Fibromyalgia.
Still having symptoms and now dealing with progressive issues of bladder control, bowel control, worsening vision concerns, EXTREME heat sensitivity, motor planning issues, a temor in my right hand, dropped foot on the left, gait issues, muscle weakness, severe muscle cramps, headaches, horrible pain with eye movement specifically in my left eye, significant memory deficits, auditory processing issues, stumbling with speech, loss of sensations in specific areas of my limbs, etc... I pretty much demanded that I see another neurologist.
Immediately upon meeting the doctor, she insisted I was having migraines without even getting a history from me. She repeatedly told me my MRI didn't show anything at all back in 2010. Not true. I had to argue it wasn't migraines. Reluctantly, she ordered Brain, Neck, and back MRI's with and without contrast. When the results came back, they wrote me a letter saying my neck and back MRI's only showed "very mild degenerative changes". Also not true. It should mild endplate changes, 4 bulging disks, 3 swollen lymph nodes, mild to moderate osteoarthritis, and several small hemangiomas in my spine.
They refused to give me the head MRI results. I went and got a copy of all MRI results. According to the final brain report, the white matter disease is still more mild, but that and the single lesion have progessed since 2010. Several different subcortical lesions were seen in my right and left frontal lobes, my parietal lobes, and in the cerebral hemispheres. All of which are new since the last MRI in 2010.
In his impressions, he says demyelinating disease including Multiple Sclerosis is the differential consideration. He also mentioned Vasculitis is a possibility. No evidence of active demylination.
I went for a follow-up with the Neurologist today and within not even a minute of entering the room (literally, I recorded the conversation)... she said it's migraines and she "doesn't care what the report said." After a heated dicussion, she ultimately told me to go find a new Neurologist. So I walked out feeling completely angry and frustrated!! She wouldn't listen to me at all.
Given the history, current symptom presentation, MRI results, and feeling like my life is being stolen from me, am I wrong to think this is Multiple Sclerosis??? Does anyone actually believe it coukd be migraines causing all of these symptoms? I have done hours and hours of research on all of this, but I can't find anything at all to suggest migraines can cause all of these symptoms, the relapsing-remitting cycles to more progressive symptoms, and the MRI reports which she wouldn't even consider????
I would like to go to a new neurologist and demand Evoked Potential Testing. I believe it's warranted in my case, but do you think it could really offer any new info? Or maybe just a new neurologist with an open mind could be helpful??
As things progressed over the years, I went from having the brief spells with a month or two in between to having what the doctor believed was 2 petite mal seizures. After that, my health declined. They originally thought it may be post-partum onset of thyroid disease (cleared.) Diabetes (cleared). Migraines (tried about 13 different meds and they either didn't change my symptoms or they made them significant worse to the point, I couldn't move. Literally.) I saw doctor after doctor and no one could tell me what was wrong. They did an MRI of my Brain (without contrast) and it came back mild White Matter Disease and a single specific lesion located deep in the white matter of the right frontal lobe. Doctors told me everything was "normal with no findings."
I had periods of remission so to speak, but now, they were getting shorter and I had multiple symptoms popping up with every time I started having symptoms again. I found a doctor who thought it may be Lyme Disease. Screener came back positive. Western Blots came back negative. She referred me to a Rheumatologist in January of this year. He believed I may have Lupus, Sjogren's Syndrome, Vasculitis, and Rheumatoid Arthritis. He did extensive blood and urine tests. He said they all came back fine and he could find anything that could be explained by labs. He ruled out Lyme Disease and all the other diagnoses listed. He agreed to try me on Lyrica 75mg in the morning and 75mg at night just in case it's Fibromyalgia.
Still having symptoms and now dealing with progressive issues of bladder control, bowel control, worsening vision concerns, EXTREME heat sensitivity, motor planning issues, a temor in my right hand, dropped foot on the left, gait issues, muscle weakness, severe muscle cramps, headaches, horrible pain with eye movement specifically in my left eye, significant memory deficits, auditory processing issues, stumbling with speech, loss of sensations in specific areas of my limbs, etc... I pretty much demanded that I see another neurologist.
Immediately upon meeting the doctor, she insisted I was having migraines without even getting a history from me. She repeatedly told me my MRI didn't show anything at all back in 2010. Not true. I had to argue it wasn't migraines. Reluctantly, she ordered Brain, Neck, and back MRI's with and without contrast. When the results came back, they wrote me a letter saying my neck and back MRI's only showed "very mild degenerative changes". Also not true. It should mild endplate changes, 4 bulging disks, 3 swollen lymph nodes, mild to moderate osteoarthritis, and several small hemangiomas in my spine.
They refused to give me the head MRI results. I went and got a copy of all MRI results. According to the final brain report, the white matter disease is still more mild, but that and the single lesion have progessed since 2010. Several different subcortical lesions were seen in my right and left frontal lobes, my parietal lobes, and in the cerebral hemispheres. All of which are new since the last MRI in 2010.
In his impressions, he says demyelinating disease including Multiple Sclerosis is the differential consideration. He also mentioned Vasculitis is a possibility. No evidence of active demylination.
I went for a follow-up with the Neurologist today and within not even a minute of entering the room (literally, I recorded the conversation)... she said it's migraines and she "doesn't care what the report said." After a heated dicussion, she ultimately told me to go find a new Neurologist. So I walked out feeling completely angry and frustrated!! She wouldn't listen to me at all.
Given the history, current symptom presentation, MRI results, and feeling like my life is being stolen from me, am I wrong to think this is Multiple Sclerosis??? Does anyone actually believe it coukd be migraines causing all of these symptoms? I have done hours and hours of research on all of this, but I can't find anything at all to suggest migraines can cause all of these symptoms, the relapsing-remitting cycles to more progressive symptoms, and the MRI reports which she wouldn't even consider????
I would like to go to a new neurologist and demand Evoked Potential Testing. I believe it's warranted in my case, but do you think it could really offer any new info? Or maybe just a new neurologist with an open mind could be helpful??
Something is going on. The eye problems you describe would not be MS. There are only two eye conditions in MS optic neuritis which would show up on any MRI after having it or on the eye test where they look at the back of the eye. That only happens in one eye at a time and many times has permanent damage. It would not happen in both eyes in a short period of time or at the same time. The other eye condition is double vision.
No test rules MS in or out and only a neurologist can diagnose it. You may need a MS Specialist to rule it in or out. Neurologists specialize and not all of them are good at MS. If a neurologist is a headache specialist Migraine may be the diagnosis. It may take time to get into a MS Specialist because there are not as many of them as other neurologists.
It takes years to be diagnosed with MS. Neurologists like to follow you overtime. When you change neurologists you often start at square one. Neurologists work a certain way. They look at the tests they do a neurological exam. That is reflexes. etc.It is more important then a MRI is. They look at your symptoms and history. Then they ask you if you have questions. This is when you bring up anything. Not before. They do not like emotion. Also they address one symptom at a time. I am given one symptom per visit.
They go by the Mc Donald Criteria. They do a lot of tests to rule any other illness out. I had clear MS from the beginning and it took two years to be diagnosed.I did go to a headache specialist and she said it was Migraine and definitely not MS.
Neurology time is slow. Stroke and such are the only emergencies which require a fast diagnosis. The trick is it is not MS until they decide it is. If they give you another appointment they are not dissing you. Concentrating on headaches is because that is a chief complaint.
Something is going on with you. It may or may not be MS. I know it is frustrating.
Alex
No test rules MS in or out and only a neurologist can diagnose it. You may need a MS Specialist to rule it in or out. Neurologists specialize and not all of them are good at MS. If a neurologist is a headache specialist Migraine may be the diagnosis. It may take time to get into a MS Specialist because there are not as many of them as other neurologists.
It takes years to be diagnosed with MS. Neurologists like to follow you overtime. When you change neurologists you often start at square one. Neurologists work a certain way. They look at the tests they do a neurological exam. That is reflexes. etc.It is more important then a MRI is. They look at your symptoms and history. Then they ask you if you have questions. This is when you bring up anything. Not before. They do not like emotion. Also they address one symptom at a time. I am given one symptom per visit.
They go by the Mc Donald Criteria. They do a lot of tests to rule any other illness out. I had clear MS from the beginning and it took two years to be diagnosed.I did go to a headache specialist and she said it was Migraine and definitely not MS.
Neurology time is slow. Stroke and such are the only emergencies which require a fast diagnosis. The trick is it is not MS until they decide it is. If they give you another appointment they are not dissing you. Concentrating on headaches is because that is a chief complaint.
Something is going on with you. It may or may not be MS. I know it is frustrating.
Alex
Forgot to add .. With the eye pain, See a neuro ophthalmologist. In my experience, and in the experience of others I know, neuro opths DON'T mess around like neurologists do.
Also, I had a diagnosis of migraine at one point. And there was concern about ALS. And my mental health ... You name it.
Also, I had a diagnosis of migraine at one point. And there was concern about ALS. And my mental health ... You name it.
JJ's response was excellent and her last paragraph is of utmost importance -- see specialists for each of your issues. I had a neurogenic bladder diagnosis 18 months before my ms neuro was willing to diagnose me.
Neurogenic cause kept piling up as i got sent around to different specialists.
When your mris aren't textbook, it's either not MS ... or you're not textbook. Be open to both possibilities and keep pursuing help for your symptoms.
Neurogenic cause kept piling up as i got sent around to different specialists.
When your mris aren't textbook, it's either not MS ... or you're not textbook. Be open to both possibilities and keep pursuing help for your symptoms.
COMMUNITY LEADER
Hi and welcome,
Your frustrations are understandable but you could be wrong in believing what you experience is definitely MS....it is actually possible that migraines could be causing some of your symptoms and if your spinal MRI additionally found "4 bulging disks, 3 swollen lymph nodes, mild to moderate osteoarthritis, and several small hemangiomas" in your spine, then it 'could be' more to do with a combination of issues is what's causing your symptoms and not just migraines on it's own...
Please keep in mind, that whilst you've mentioned symptoms that might be similar-same as the symptoms associated with MS, there's actually a lot of absent specific neurological diagnostic information that would mean neurological conditions like MS would be a potential causation eg bladder/bowel control - diagnosed neurogenic bladder/bowel dysfunction, worsening vision - diagnosed diplopia, nystagmus, optic neuritis etc
Whilst dropped foot and gait issues are associated with MS, the peroneal nerve is susceptible to different types of injury, MS spinal cord lesions are a 'less likely' cause of your foot drop and the resulting gait issues, when nerve compression from lumbar disc herniation, sciatic nerve issues, spinal stenosis etc are more likely when you've got MRI evidence of structural spinal issues....etc
MS has many mimics, most symptoms associated with MS are more commonly associated with many other medical conditions too, so whilst your symptoms may seem like it could be MS what's more significant in regards to MS is actually your abnormal neurological clinical signs that corroborate the symptoms are neurologically caused.
You said back in 2010 "They did an MRI of my Brain (without contrast) and it came back mild White Matter Disease and a single specific lesion located deep in the white matter of the right frontal lobe. Doctors told me everything was "normal with no findings." "....i really don't know why white matter disease was even mentioned if there was only one lesion in the frontal lobe, having a few small ischemic vascular lesions is generally normal, and if there were no other details in the original 2010 MRI report it's overall not informative enough to compare with your latest MRI that provides a lot more information.
MRI reports often list demyelination or multiple sclerosis, as well as the other more common explanations in the differentials...when there isn't anything to distinguish the type of lesion(s) they usually classified as non-specific and list a few differentials, so having MS within the differentials usually doesn't mean anything diagnostically if that's all there is...
Lesion location is important in diagnosing MS, as is lesion size, shape, enhancing etc that distinguishes demyelinating lesions from the more common ischemic vascular ones, the MS Mcdonald criteria requires periventricular, juxtacortical, infratentorial or spinal cord lesions, your latest MRI with more detailed location information wouldn't actually meet the diagnostic criteria for MS.
I do think you'd benefit from more testing, to at least determine if the symptoms you have are neurogenic in nature or not, sometimes it's better to have the individual diagnostic evidence in hand ie get your visual issues assessed by an ophthalmologist, nerve conductor tests to determine if there is peripheral nerve issues, physical therapist or movement specialist assessment of your foot drop and gait issues, identify the type of tremor it is etc the more evidence suggestive or consistent with a neurological causation the better, and IF it doesn't tune out to be neurogenic that can still help narrow down causation and will help too.
Hope that helps.......JJ
Your frustrations are understandable but you could be wrong in believing what you experience is definitely MS....it is actually possible that migraines could be causing some of your symptoms and if your spinal MRI additionally found "4 bulging disks, 3 swollen lymph nodes, mild to moderate osteoarthritis, and several small hemangiomas" in your spine, then it 'could be' more to do with a combination of issues is what's causing your symptoms and not just migraines on it's own...
Please keep in mind, that whilst you've mentioned symptoms that might be similar-same as the symptoms associated with MS, there's actually a lot of absent specific neurological diagnostic information that would mean neurological conditions like MS would be a potential causation eg bladder/bowel control - diagnosed neurogenic bladder/bowel dysfunction, worsening vision - diagnosed diplopia, nystagmus, optic neuritis etc
Whilst dropped foot and gait issues are associated with MS, the peroneal nerve is susceptible to different types of injury, MS spinal cord lesions are a 'less likely' cause of your foot drop and the resulting gait issues, when nerve compression from lumbar disc herniation, sciatic nerve issues, spinal stenosis etc are more likely when you've got MRI evidence of structural spinal issues....etc
MS has many mimics, most symptoms associated with MS are more commonly associated with many other medical conditions too, so whilst your symptoms may seem like it could be MS what's more significant in regards to MS is actually your abnormal neurological clinical signs that corroborate the symptoms are neurologically caused.
You said back in 2010 "They did an MRI of my Brain (without contrast) and it came back mild White Matter Disease and a single specific lesion located deep in the white matter of the right frontal lobe. Doctors told me everything was "normal with no findings." "....i really don't know why white matter disease was even mentioned if there was only one lesion in the frontal lobe, having a few small ischemic vascular lesions is generally normal, and if there were no other details in the original 2010 MRI report it's overall not informative enough to compare with your latest MRI that provides a lot more information.
MRI reports often list demyelination or multiple sclerosis, as well as the other more common explanations in the differentials...when there isn't anything to distinguish the type of lesion(s) they usually classified as non-specific and list a few differentials, so having MS within the differentials usually doesn't mean anything diagnostically if that's all there is...
Lesion location is important in diagnosing MS, as is lesion size, shape, enhancing etc that distinguishes demyelinating lesions from the more common ischemic vascular ones, the MS Mcdonald criteria requires periventricular, juxtacortical, infratentorial or spinal cord lesions, your latest MRI with more detailed location information wouldn't actually meet the diagnostic criteria for MS.
I do think you'd benefit from more testing, to at least determine if the symptoms you have are neurogenic in nature or not, sometimes it's better to have the individual diagnostic evidence in hand ie get your visual issues assessed by an ophthalmologist, nerve conductor tests to determine if there is peripheral nerve issues, physical therapist or movement specialist assessment of your foot drop and gait issues, identify the type of tremor it is etc the more evidence suggestive or consistent with a neurological causation the better, and IF it doesn't tune out to be neurogenic that can still help narrow down causation and will help too.
Hope that helps.......JJ
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
