Aa
Two weeks to see the Doctor
I am anxious waiting to go back to see the doctor, so I wanted to see if anybody had an answer to a big question I have. I started about 2 months ago with a pain in my left arm. That processed to pins and needles/ very cold and hot sensations in my left arm. and a tightness where my bra is around my chest. Went to the hospital because I thought it was cardiac, but they quickly switched to Neurological.
No Lesions on the Thoracic or Cervical MRI. My Brain MRI showed lesions that the report said were suggest of dyelimination. My neuro exam was not completely normal as I could tell because there was a resident with the doctor and they talked about things. I believe something was wrong with my walk and something about my arm ( I walked with it up like in a sling on left side)
Some other symptoms that i have no idea are related or not. I stumble with my left foot quite often (look back and think there must be a hill in the carpet). I often slide down the step with my left foot down to the next step. Once fell down the whole flight of stairs that way.
I keep typing the wrong keys at work. and I often will have painful muscle charley horses in my calf and feet/ toes at night. Seem to do it for a few days at a time then nothing for a while.
The doctor sent me for Evoked potentials which were all normal. She is sending me for Lumbar Puncture now.
The MS doctor said my lesions were typical of MS, with the exception that they were not active. I think she said they were older? She said even if the tests came back negative (Evoked and Lumbar), she still would not say I do not have MS. My questions are: how could I have symptoms if no lesions are active? And could I really have MS if my evoked tests are normal?
No Lesions on the Thoracic or Cervical MRI. My Brain MRI showed lesions that the report said were suggest of dyelimination. My neuro exam was not completely normal as I could tell because there was a resident with the doctor and they talked about things. I believe something was wrong with my walk and something about my arm ( I walked with it up like in a sling on left side)
Some other symptoms that i have no idea are related or not. I stumble with my left foot quite often (look back and think there must be a hill in the carpet). I often slide down the step with my left foot down to the next step. Once fell down the whole flight of stairs that way.
I keep typing the wrong keys at work. and I often will have painful muscle charley horses in my calf and feet/ toes at night. Seem to do it for a few days at a time then nothing for a while.
The doctor sent me for Evoked potentials which were all normal. She is sending me for Lumbar Puncture now.
The MS doctor said my lesions were typical of MS, with the exception that they were not active. I think she said they were older? She said even if the tests came back negative (Evoked and Lumbar), she still would not say I do not have MS. My questions are: how could I have symptoms if no lesions are active? And could I really have MS if my evoked tests are normal?
COMMUNITY LEADER
Hi and welcome,
I'll respond with the assumption your neurologist is focusing on MS because the size, shape and locations of the brain lesions are suggestive/consistent with MS....
IF any of the lesions light up with contrast it means they are newly developed or still demyelinating, active lesions = myelin is under attack and highlighting (active) lesions are the MRI evidence of current demyelination and the patient currently relapsing.
If any of the lesions don't light up with contrast, it means the myelin is not under attack and or the demyelination is complete and typically older lesions from previous attacks but to complicate things a little, there is a time frame of up to 45 days to catch demyelinating lesions lighting up so the patients last attack or relapse could of ended within that window and the MRI didn't catch a new attack happening.
The types of symptoms and neurological clinical signs you have is unique to each pwMS, it's not uncommon for someone to have had MS for years before a lesion develops in a location that causes something to happen that can't be dismissed and or gets the patients attention...one of our community members had had MS for over 20 years before another attack effected him physically and got his attention that something was wrong.
It literally depends on how long you've had MS for, how many attacks there's been in that time, the location of the lesion(s), the type of symptom you have, brain plasticity etc etc etc on whether complete or partial recovery is even possible between attacks, unfortunately there are no guarantees on how long it will take to recover or if recovery is possible...
The rule of thumb with relapses is that it's a new relapse if previously recovered symptoms return 'and or' existing symptoms worsen 'and or' you experience a new symptom and it has to last longer than 24-48 hours and it's been longer than 30 days since your last relapse.
The most common use of evoked potential testing is for the diagnosis (dx) of multiple sclerosis, an evoked potential test measures the time it takes for nerves to respond to stimulation but it is not considered as a test specific or exclusive for an MS diagnosis.
Visual evoked response (VER) – This is the most common type used especially in diagnosing MS, due to the high % of optic nerve damage and ON (optic neuritis) being the most common clinical sign that leads to a dx of MS. A normal VEP can be fairly sensitive in excluding a lesion of the optic nerve, along its pathways in the anterior part of the brain but normal results do not exclude MS from being the more likely causation.
Facing a potential dx of MS can be confusing and very scary BREATH the diagnostic process may take a very long time to work out and as unbelievable as it may seem at the moment it actually may not turn out to be MS in the end.
I hope that helps.....JJ
PS if you have any other questions please feel free to ask and i'll do my best to answer!
I'll respond with the assumption your neurologist is focusing on MS because the size, shape and locations of the brain lesions are suggestive/consistent with MS....
IF any of the lesions light up with contrast it means they are newly developed or still demyelinating, active lesions = myelin is under attack and highlighting (active) lesions are the MRI evidence of current demyelination and the patient currently relapsing.
If any of the lesions don't light up with contrast, it means the myelin is not under attack and or the demyelination is complete and typically older lesions from previous attacks but to complicate things a little, there is a time frame of up to 45 days to catch demyelinating lesions lighting up so the patients last attack or relapse could of ended within that window and the MRI didn't catch a new attack happening.
The types of symptoms and neurological clinical signs you have is unique to each pwMS, it's not uncommon for someone to have had MS for years before a lesion develops in a location that causes something to happen that can't be dismissed and or gets the patients attention...one of our community members had had MS for over 20 years before another attack effected him physically and got his attention that something was wrong.
It literally depends on how long you've had MS for, how many attacks there's been in that time, the location of the lesion(s), the type of symptom you have, brain plasticity etc etc etc on whether complete or partial recovery is even possible between attacks, unfortunately there are no guarantees on how long it will take to recover or if recovery is possible...
The rule of thumb with relapses is that it's a new relapse if previously recovered symptoms return 'and or' existing symptoms worsen 'and or' you experience a new symptom and it has to last longer than 24-48 hours and it's been longer than 30 days since your last relapse.
The most common use of evoked potential testing is for the diagnosis (dx) of multiple sclerosis, an evoked potential test measures the time it takes for nerves to respond to stimulation but it is not considered as a test specific or exclusive for an MS diagnosis.
Visual evoked response (VER) – This is the most common type used especially in diagnosing MS, due to the high % of optic nerve damage and ON (optic neuritis) being the most common clinical sign that leads to a dx of MS. A normal VEP can be fairly sensitive in excluding a lesion of the optic nerve, along its pathways in the anterior part of the brain but normal results do not exclude MS from being the more likely causation.
Facing a potential dx of MS can be confusing and very scary BREATH the diagnostic process may take a very long time to work out and as unbelievable as it may seem at the moment it actually may not turn out to be MS in the end.
I hope that helps.....JJ
PS if you have any other questions please feel free to ask and i'll do my best to answer!
1 Comments
Thank you so much for the information! I really appreciate you taking the time to explain it so well. It’s so frustrating waiting for the next appointment. But I do see from reading some threads in here that it is normal to have a waiting game with possible MS. Thank you!
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
