Hi everyone,
New here, first post. I apologize in advance that it's so long! I'm hoping someone here can help me see the bigger picture. The longer this diagnostic process goes on the more I want to say forget it and sweep it all under the rug but I know something is wrong so here I am.
About a month ago I started having this weird thing happen. The left side of my body primarily my leg arm and hip would have this feeling of extreme pressure, tingling, falling asleep, but painful feeling. I feel like I can't move that side of my body when it happens. I call them episodes because it would last for about 30 seconds and gradually subside. At first it only happened a few times a day so I ignored it after it happened and went on about my business. Then it started to happen multiple times an hour throughout the entire day. My hands were also feeling weak primarily in the mornings. At that point I went to the ER.
Long story short, they did and EKG which came back normal and then an MRI and CT. The MRI came back showing showing a spot is what they told me at the ER. Wouldn't really give me further details. They decided to admit me and thus began 6 days of more MRIs, CT scans, heart exams, blood tests, and a spinal tap. I was being treated by an internist and a neurologist (not an MS specialist) who both told me that they suspected MS. Most all of my blood tests came back normal except for really low (12) levels of Vitamin D and something about muscle loss. My MRI results are below but basically show several lesions (one large one) in the white matter. Spinal tap came back positive for over 5 O-bands and slightly (47) elevated protein levels. The EVP had slight abnormality but I was told it was basically normal. The neurologist at that point decided to do 3 days of steroid infusions when the baclafin (sp?) and keppra medications weren't working. They said they couldn't find the inflammation in the scans but would try steroids. Well after the first day the symptoms began to subside and the left side issue hasn't come back although that side of my body still feels a bit weak. At that point they released me from the hospital, put me on a steroid taper, and referred me to an MS neurologist at John Hopkins.
I met with him 2 weeks ago and he said that my MRI and spinal tap both indicate MS but that he wanted to run more tests especially since I have Celiac disease. He also said that my story (I guess referring to my symptoms) don't match anything that he's heard of with MS. But at a later point came back and said sounded like extreme case of parathesia.
Well, all of the blood tests and the eye test (can't remember the name) are coming back normal as well as the genetic tests that he ordered. At this point we are waiting on the body CT scan results. They only did the thorasic spine CT at the hospital and he wants to see what is going in my lower spine and pelvis. He put me on vitamin d once a week and is tapering me off of the keppra.
My new neurologist seems good but he's very nonchalant so I guess I just want some feedback before I put my head under the sand and convince myself that it is nothing. I'm pretty good at doing that. I stopped smoking when I went into the hospital and haven't started back but sometimes I find myself thinking, hey why not they don't know what's wrong so I might as well! But I know that is pretty dumb.
Anyways, what do you all think?
The MRI results that came back are as follows:
MRI w/contrast:
Evaluation #1-
Indication:
Multiple sclerosis.
Comparison: None available
Technique:
Coronal and sagittal T2 FLAIR and coronal and axial T1 postcontrast MR images of the brain.
Sagittal T1, T2, T2 STIR, and T1 postcontrast, and axial T1, T2, and T1 postcontrast MR images of the cervical spine.
Sagittal T1, T2, T2 STIR, and T1 postcontrast, and axial T2 and T1 post enters MR images of the thoracic spine.
Findings:
Scattered T2 FLAIR hyperintense lesions involving periventricular and subcortical white matter, in keeping with patient's clinical history of multiple sclerosis. The largest lesion is seen in the right frontal region, and measures approximately 9 x 8 cm in the greatest axial dimension. No enhancement on post contrast images to suggest active demyelination.
The ventricles, basal cisterns, and sulci are present in size for age. No mass effect. No midline shift. No extra axial collection. Paranasal sinuses with evidence of trace because of thickening. Mastoid air cells are clear.
Evaluation#2- John Hopkins
IMPRESSION:
Second opinion consultation.
Brain MRI, 6/2/2015:
A number of T2 FLAIR hyperintense lesions involving periventricular and subcortical white matter in keeping with patient's history of multiple sclerosis. No evidence of active demyelination. No prior exam available for comparison.
The part that is confusing is that both say "in keeping with patient's history of multiple sclerosis." Which is weird considering I don't have a history of MS.
Lost and confused...
Toni~
**Moderator's Note - edited for easier reading. The color and font changes were not working properly**
New here, first post. I apologize in advance that it's so long! I'm hoping someone here can help me see the bigger picture. The longer this diagnostic process goes on the more I want to say forget it and sweep it all under the rug but I know something is wrong so here I am.
About a month ago I started having this weird thing happen. The left side of my body primarily my leg arm and hip would have this feeling of extreme pressure, tingling, falling asleep, but painful feeling. I feel like I can't move that side of my body when it happens. I call them episodes because it would last for about 30 seconds and gradually subside. At first it only happened a few times a day so I ignored it after it happened and went on about my business. Then it started to happen multiple times an hour throughout the entire day. My hands were also feeling weak primarily in the mornings. At that point I went to the ER.
Long story short, they did and EKG which came back normal and then an MRI and CT. The MRI came back showing showing a spot is what they told me at the ER. Wouldn't really give me further details. They decided to admit me and thus began 6 days of more MRIs, CT scans, heart exams, blood tests, and a spinal tap. I was being treated by an internist and a neurologist (not an MS specialist) who both told me that they suspected MS. Most all of my blood tests came back normal except for really low (12) levels of Vitamin D and something about muscle loss. My MRI results are below but basically show several lesions (one large one) in the white matter. Spinal tap came back positive for over 5 O-bands and slightly (47) elevated protein levels. The EVP had slight abnormality but I was told it was basically normal. The neurologist at that point decided to do 3 days of steroid infusions when the baclafin (sp?) and keppra medications weren't working. They said they couldn't find the inflammation in the scans but would try steroids. Well after the first day the symptoms began to subside and the left side issue hasn't come back although that side of my body still feels a bit weak. At that point they released me from the hospital, put me on a steroid taper, and referred me to an MS neurologist at John Hopkins.
I met with him 2 weeks ago and he said that my MRI and spinal tap both indicate MS but that he wanted to run more tests especially since I have Celiac disease. He also said that my story (I guess referring to my symptoms) don't match anything that he's heard of with MS. But at a later point came back and said sounded like extreme case of parathesia.
Well, all of the blood tests and the eye test (can't remember the name) are coming back normal as well as the genetic tests that he ordered. At this point we are waiting on the body CT scan results. They only did the thorasic spine CT at the hospital and he wants to see what is going in my lower spine and pelvis. He put me on vitamin d once a week and is tapering me off of the keppra.
My new neurologist seems good but he's very nonchalant so I guess I just want some feedback before I put my head under the sand and convince myself that it is nothing. I'm pretty good at doing that. I stopped smoking when I went into the hospital and haven't started back but sometimes I find myself thinking, hey why not they don't know what's wrong so I might as well! But I know that is pretty dumb.
Anyways, what do you all think?
The MRI results that came back are as follows:
MRI w/contrast:
Evaluation #1-
Indication:
Multiple sclerosis.
Comparison: None available
Technique:
Coronal and sagittal T2 FLAIR and coronal and axial T1 postcontrast MR images of the brain.
Sagittal T1, T2, T2 STIR, and T1 postcontrast, and axial T1, T2, and T1 postcontrast MR images of the cervical spine.
Sagittal T1, T2, T2 STIR, and T1 postcontrast, and axial T2 and T1 post enters MR images of the thoracic spine.
Findings:
Scattered T2 FLAIR hyperintense lesions involving periventricular and subcortical white matter, in keeping with patient's clinical history of multiple sclerosis. The largest lesion is seen in the right frontal region, and measures approximately 9 x 8 cm in the greatest axial dimension. No enhancement on post contrast images to suggest active demyelination.
The ventricles, basal cisterns, and sulci are present in size for age. No mass effect. No midline shift. No extra axial collection. Paranasal sinuses with evidence of trace because of thickening. Mastoid air cells are clear.
Evaluation#2- John Hopkins
IMPRESSION:
Second opinion consultation.
Brain MRI, 6/2/2015:
A number of T2 FLAIR hyperintense lesions involving periventricular and subcortical white matter in keeping with patient's history of multiple sclerosis. No evidence of active demyelination. No prior exam available for comparison.
The part that is confusing is that both say "in keeping with patient's history of multiple sclerosis." Which is weird considering I don't have a history of MS.
Lost and confused...
Toni~
**Moderator's Note - edited for easier reading. The color and font changes were not working properly**
Comment