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What I Went Through to Get a Diagnosis
Hi, I'm Quix. This is my story of finally getting a diagnosis of MS. If you have been worked up for MS and have a diagnosis - Whatever that dianosis is - Would you post below and add your story? Thank you.
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 was terrified, and a neighbor had to help me home. Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day. Each time I was sure I was being incontinent, but nothing was there!
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. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....
I'm now two months into therapy with Avonex. I'm through a new relapse (my fourth in the 30 months). A repeat 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 showed half a dozen old spinal lesions which were missed by the previous older machines. 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 lesions that press 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
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 was terrified, and a neighbor had to help me home. Some months later I had a couple weeks of a weird sensation of warm water running down my right thigh. It would happen off and on all during the day. Each time I was sure I was being incontinent, but nothing was there!
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. The scary loss of function, the not knowing why, and the anger at being dismissed and discarded by my doctor. Ya know, the vertigo had been quite enough....
I'm now two months into therapy with Avonex. I'm through a new relapse (my fourth in the 30 months). A repeat 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 showed half a dozen old spinal lesions which were missed by the previous older machines. 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 lesions that press 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
Thank-you!! That made me smile. The hardest part right now is the vision loss. I can't drive or work-that is hard for me being so active. I've had MRI's is the past year for a back injury. The ER doc called me this morning and said there were lesion's found on it. ( I guess they forgot to mention this last year) He said the MS dx is correct. I can handle that, but I hope and pray my vision improves.
Your vision will improve.Have you seen a neurologist yet?
What part of your spine did they find the lesions?
Solu-medrol IV infusion therapy is the normal choice of treatment of visual loss,blurriness and optical neuritis.Usually after a few days the vision improves.
Sorry to hear that you have joined the rest of us mser's.Its liveable and we have bad days.
My initial DX was in 1998 after a back surgery and I couldn't walk,I dismissed the DX and didn't have another attack until September 2004.I was re Dx'd in December of 2006 .Been on Rebif since.
Hopefully you'll get through this attack with no or very minimal residual effects and have years between the next attack.
Stay positive and ask lots of questions.Like Quix said a stranger in a strange land,she quoted it just right.That is how my MS makes me feel.
What part of your spine did they find the lesions?
Solu-medrol IV infusion therapy is the normal choice of treatment of visual loss,blurriness and optical neuritis.Usually after a few days the vision improves.
Sorry to hear that you have joined the rest of us mser's.Its liveable and we have bad days.
My initial DX was in 1998 after a back surgery and I couldn't walk,I dismissed the DX and didn't have another attack until September 2004.I was re Dx'd in December of 2006 .Been on Rebif since.
Hopefully you'll get through this attack with no or very minimal residual effects and have years between the next attack.
Stay positive and ask lots of questions.Like Quix said a stranger in a strange land,she quoted it just right.That is how my MS makes me feel.
Thank you for sharing the intimate details of your illness. My story is on another post about CNS Demyelinating Disease. Thanks again and Good Luck with the vision issues. (MedicGirl) I have been having creepy issues with my vision as well!!
The doc said the lesions were found on the c-spine. They gave me prednisone at the ER. The scarey part is not knowing. But reading everyone's stories does help. They are inspiring. I will pray for everyone.........
At least you have some evidence now. Some answers. Does it mean anything to you? How do you feel?
I wish you the best~
Chris*
I wish you the best~
Chris*
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