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What it took for a diagnosis of MS
I am a 55 year old, white female. Seven years ago I was hit by intractable vertigo and, despite being treated by one of the world's foremost experts in vertigo, was forced to retire from being a pediatrician. I had very complicated problems in the inner ear on the left. But eventually the problems spread to my right ear also. I was diagnosed with Autoimmune Inner Ear Disease. I was almost bedridden for a good portion of the first 4 years suffering from daily dizziness, nausea, poor balance with a lot of falls, and the worst fatigue I had ever sufferd. Remember I had trained in a huge county hospital and regularly spent 36 hours straight on my feet. The fatigue with vertigo is worse!!
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I had a couple weeks of a weird sensation of warm water running down my right thigh.
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.
My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine.
He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.
Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.
so I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
Two and a half years ago one morning I was putting on my shoes and socks and realized I couldn't lift my R leg onto the other to put on my socks. I could barely lift it off the ground. I saw my internist who noted pathologically hyperactive reflexes on both knees and ankles, weakness of the R hip flexors and referred me to the neurologist I had seen before for migraines.
The neurologist who I already knew thought I was a crock, examined me and found mild extensor spasticity in my right leg - mainly at the hip. He sent me for an MRI w and w/o contrast of my brain and spine. Next visit he said the MRI's were completely normal. There was an UBO (Unidentified Bright Object) in the brain, but that this was inconsequential. He said it definitely wasn't MS and that I was too old for it anyway. He sent me home. Dx Vertigo and Spasticity- mild. Later I discovered in his notes that he thought I was faking the weakness.
During the next year I was dieting and lost 50 pounds slowly, but developed intermittent urinary incontinence. (losing weight is supposed to help that!) I also became much more fatigued than I was before, but wrote that off to being so deconditioned by spending all day in my recliner. Also, after years of living in the desert, became severely sensitive to even mild heat in my apartment. It made me weak and irrationally irritable. I was trying to get in short daily walks. One day it was a little warmer than usual and I couldn't make it home due to sudden weakness in both legs. I had a couple weeks of a weird sensation of warm water running down my right thigh.
I went back to the neuro a year after he had seen me before. He repeated the MRI and did the complete battery of blood tests for the causes of myelopathy (disease of brain and spinal cord) Again the MRI was normal and so were all the blood tests. He appeared annoyed by my return to see him. He called me and asked "if I WANTED a spinal tap." This was implying that I was faking the problems and just wanted to get medical procedures. Yeah, right...
Last summer (2006) suddenly one day I could not lift my right arm even to touch my throat. It was completely useless for about 36 hours, got a little better over the next week, but still felt weak and so fatigued. When I tried to use my right hand it felt foreign as if I was trying to use someone else's hand. It slowly improved over the next couple months. Even so I was left with residual weakness at the shoulder. Meanwhile I'm dragging my right leg, because it never got better and lurching about like a drunk sailor. So tired that I stopped leaving the house.
My sister came to live with me, because I could not handle the house and errands. I became seriously depressed.
It was several months before I could get my mental strength and courage to research my own problems. My self-esteem was non-existent. By the end of 2006 I knew the only neurological disease that fit my symptoms of weakness, spasticity, parathesias, bladder problems, fatigue, heat intolerance, and the now two attacks of problems that came, stayed and then slowly resolved was MULTIPLE SCLEROSIS. All the other possible entities had been ruled out (this is critical in the daignosis of MS if the findings aren't perfectly classic) The problem was that my MRI was normal and I was too old at 54. You can suspect MS, but you cannot diagnose it without at least 1 brain or spine lesion on MRI.
I went to the MS Society website and looked for MS specialists in my area. I found one, made an appointment and my GP was very agreeable to making a referral. The new neurologist was wonderful! Intense, smart and thorough. In retrospect he made the diagnosis of MS on that first visit. He stated that calling the spot on my MRI a UBO was laughable. It was classic for an MS plaque (well-circumscribed, oval, perpendicular to the ventricles ). He was also stunned that my other neuro had not pushed hard for a spinal tap. That is the next step when the MRI is not diagnostic. He prescribed Provigil for the fatigue (miracle drug for me) and repeated another MRI of brain and spine.
He also ordered the spinal tap which I had under fluoroscopy guidance. It was absolutely painless and without complications.
Those MRI's didn't show any definite new lesions, but he was very suspicious of two little areas on my cervical spine.
The tap was positive for an elevated IgG index and I had only one (of course) oligoclonal band. They like to see 2 or more. The cell count was lost!
Based on a physical exam which showed a huge amount of existing spinal cord disease, a single plaque on my brain, the normal blood work up for myelopathy, and suggestive findings on the spinal tap he made the diagnosis of MS. He said it wasn't a "slam-dunk" diagnosis, but he was at least 90% sure. He, and many opther experts in the field, feel that for many people the MRI machines are just not sensitive enough. They improve every year or two. His concern was than in just 2 years, I was already very disabled. I've had intensive physical therapy and still required a brace on my R leg and I need to use a cane. The disease was/is progressing fast. He put me in the category of Relapsing Remitting only because if I had a progressive type I should have many, many more brain lesions, but my disease is acting more like the rarest type called Progressive Relapsing.
In my reading late onset MS is often marked by faster progression of disability and more by motor dysfunction than by sensory problems. This fits with what I have had.
So this was my short course to diagnosis. Not nearly as horrific as it has been for many of you, but it has been devastating to me. Ya know, the vertigo had been quite enough....
I'm now two weeks into therapy with Avonex. I'm in a new relapse (my fourth in the 30 months) and just had another MRI of my C-spine and T-spine with one of the newest generation of MRI machines which has a more powerful (3 Tesla) magnet. I'm having constant electric shocks down my left leg when I flex my neck. Dozens of times a day. It's called L'Hermitte's Sign, and it is common in MS, but new to me. It is felt to indicate upper spine lesion that presses on normal nerves when the neck is flexed.
so I, too, am a Stanger in a Strange Land. I hope that here on the forums I can learn from you and share some of my understanding of how things work from 23 years in medical practice.
Quix
Any comments? Later I'll try to list some of the things I've learned from all this. Quix
We need you to add your stories. this is an ongoing thread. Thanks, Quix
Thanks so much for sharing all of this. I am kind of in limbo right now, wondering what to do next. I am 44. I started "mild" Optic Neuritis in May along with major fatigue, odd sensations, and a feeling that my right leg was disconnected. Not numb, but not mine.
My brain MRI report confirmed the ON and showed on new and one old spot in the white matter. The spots were reported as demylination by the radiologist, but the neurologist felt they were from high bp, which I do have but has been controlled by meds for years.
Her exame was very brief. I am wondering if that is due to my age and the fact that the eye doctor had already told her he felt the spots on my MRI were due to bp or a virus. Not sure. I didn't realize I was sick with a virus!!
Anyway, when she did the reflex test on my right knee I about jumped off the table. It was painful. My right foot almost seemed like it had no reflex at all. She tried to get a babinski reflex on my right foot and got nothing. My left leg acted fine.
She spent very little time asking about symptoms. She did send me for a c-spine. She never saw the film for the c-spine, decided to take the radiologist report as fact this time I guess. But went against his report for the brain MRI. Seems a bit inconsistant to me. Doesn't it?
I had a BAER, VER, and SSER done yesterday. The tech said things looked ok but the doctor had to look at them.
So, here I am wondering what to do next. My ON is getting somewhat better. I am at my 10th week with it. I am praying more of my vision returns. Things are still blurry. They tell me it was mild. If this was mild I would hate to have a bad case of it! I have been miserable!! I can't drive very far because it is difficult and I get tired.
So, I am wondering if I should collect all of my tests and go to a MS clinic. How do I know for sure the spots on my MRI are related to a virus or bp and not MS? They were not in the exact spot or the right shape for MS, but the radiologist did call them demylenation. Who do I believe? The radiologist or the nuerologist?
I am also having trouble with what MIGHT be foot drop. When my right leg is fatigued I can not go back on my heel on my right foot. I can hardly get my toes up off of the ground. My left foot is fine. I can even do calf exercises with my left foot. I can not longer do them with my right foot. I can not support very much weight on that foot.
HOpe this is not too long! I just do not want to be brushed off by this doctor. I have a family. I have 5 small children. I want to have at least an idea of what is going on with me. I am very worried.
LATW
My brain MRI report confirmed the ON and showed on new and one old spot in the white matter. The spots were reported as demylination by the radiologist, but the neurologist felt they were from high bp, which I do have but has been controlled by meds for years.
Her exame was very brief. I am wondering if that is due to my age and the fact that the eye doctor had already told her he felt the spots on my MRI were due to bp or a virus. Not sure. I didn't realize I was sick with a virus!!
Anyway, when she did the reflex test on my right knee I about jumped off the table. It was painful. My right foot almost seemed like it had no reflex at all. She tried to get a babinski reflex on my right foot and got nothing. My left leg acted fine.
She spent very little time asking about symptoms. She did send me for a c-spine. She never saw the film for the c-spine, decided to take the radiologist report as fact this time I guess. But went against his report for the brain MRI. Seems a bit inconsistant to me. Doesn't it?
I had a BAER, VER, and SSER done yesterday. The tech said things looked ok but the doctor had to look at them.
So, here I am wondering what to do next. My ON is getting somewhat better. I am at my 10th week with it. I am praying more of my vision returns. Things are still blurry. They tell me it was mild. If this was mild I would hate to have a bad case of it! I have been miserable!! I can't drive very far because it is difficult and I get tired.
So, I am wondering if I should collect all of my tests and go to a MS clinic. How do I know for sure the spots on my MRI are related to a virus or bp and not MS? They were not in the exact spot or the right shape for MS, but the radiologist did call them demylenation. Who do I believe? The radiologist or the nuerologist?
I am also having trouble with what MIGHT be foot drop. When my right leg is fatigued I can not go back on my heel on my right foot. I can hardly get my toes up off of the ground. My left foot is fine. I can even do calf exercises with my left foot. I can not longer do them with my right foot. I can not support very much weight on that foot.
HOpe this is not too long! I just do not want to be brushed off by this doctor. I have a family. I have 5 small children. I want to have at least an idea of what is going on with me. I am very worried.
LATW
I'm bumping this up to the front so that newcomers can read our stories and that some of our newly diagnosed people, like Katrina (karzme) and JonM can add their stories. Quix
I got my newest MRI results today. No active lesions, but 2 lesions in the medulla (brainstem), 2 in the cervical spine, and 1 or 2 in the thoracic spine. I thought I would be pleased, but I'm just pissed again. I don't like this disease. I want to send it back! Who do I complain to? I want my money back (did I sign a contract?....) :(
Hey Jeanne,
Sorry it's taken so long to reply, been a bit under the weather and very nervous at the prospect of going into hospital tomorrow for my first bout of steroids. I have refused all forms of meds up until now because of the side effects - but now after having MS for 7 years now it's time. I have lost the vision in my left eye due to diplopia and now I am having another relapse with my right eye.
I chose Copaxone mainly because of the lesser side effects - I have a 4 year old son (long story - blame Provigil for that - another side effect is that the contraceptive pill is useless when you take it). So if it is true what the pharmas say and that the side effects last only for 20 mins then that is my drug of choice - keep you posted on that one :)
You didn't sound harsh, I know what it feels lke sometimes things just come out not quite the way you meant them to sound - I do it all the time. I just say "oops just having another MS moment:)" So I guess what I'm trying to say is that no offence was meant and no offence was taken.
The link that may well help you is mswebpals.org - it's a place with PWMS go and talk - it's really helpful and supportive.
Talk later - if you do go into the chatroom let me know your nickname OK?? there are people there from all over the world, and there is usually always someone there to talk to.
Debs X
Sorry it's taken so long to reply, been a bit under the weather and very nervous at the prospect of going into hospital tomorrow for my first bout of steroids. I have refused all forms of meds up until now because of the side effects - but now after having MS for 7 years now it's time. I have lost the vision in my left eye due to diplopia and now I am having another relapse with my right eye.
I chose Copaxone mainly because of the lesser side effects - I have a 4 year old son (long story - blame Provigil for that - another side effect is that the contraceptive pill is useless when you take it). So if it is true what the pharmas say and that the side effects last only for 20 mins then that is my drug of choice - keep you posted on that one :)
You didn't sound harsh, I know what it feels lke sometimes things just come out not quite the way you meant them to sound - I do it all the time. I just say "oops just having another MS moment:)" So I guess what I'm trying to say is that no offence was meant and no offence was taken.
The link that may well help you is mswebpals.org - it's a place with PWMS go and talk - it's really helpful and supportive.
Talk later - if you do go into the chatroom let me know your nickname OK?? there are people there from all over the world, and there is usually always someone there to talk to.
Debs X
Hi!
I know what you went through.I too am in "limbo" and am still waiting for a definite dx.
I am in the middle of my 4th flare in 4 yrs and my primary dr tells me she still thinks it is MS.
BUT....
I have been seen at a MS Clinic many times and they tell me that no,it is not because my MRI's are all normal.
I am very frustrated because I am basicly stuck.
Meanwhile,my symptoms are getting worse and now I have to use a cane again because my feet are too heavy to walk right.
Why do Dr's think that a positive MRI is the only way you can get dx'ed?
I meet all of the criteria except for that...:(
Rhonda
I know what you went through.I too am in "limbo" and am still waiting for a definite dx.
I am in the middle of my 4th flare in 4 yrs and my primary dr tells me she still thinks it is MS.
BUT....
I have been seen at a MS Clinic many times and they tell me that no,it is not because my MRI's are all normal.
I am very frustrated because I am basicly stuck.
Meanwhile,my symptoms are getting worse and now I have to use a cane again because my feet are too heavy to walk right.
Why do Dr's think that a positive MRI is the only way you can get dx'ed?
I meet all of the criteria except for that...:(
Rhonda
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