Aa
I believe I have MS, my Dr doesn't
Quix,
This is my first post so let me start by apologizing for it's length. I'll try to keep it concise.
I broke my leg in a car crash in 9/05 and subsequently developed a PE. In 7/06, I suffered a CVA. The MRI report does state that I have a 1.3 x 1.1 cm acute/subacute infarct on the right side of the pons with no hemorrage identified. It also states that I have a mild patchy foci of T2 and FLAIR signal hyperintensity in the periventricular and subcortical white matter. The differential diagnoss includes demyelinating disease (MS), vasculitis, and migranes.
I do believe that I had a pontine stroke. Blood tests show that I have a clotting disorder - Prothrombin Gene Mutation. Vasculitis was ruled out with a sed rate. And I can count on one hand the number of migraines I had experienced up to the time of my stroke. That leaves MS. But every doctor I see insists that I had two strokes at one time. They can't seem to get past my clotting disorder. And I might be inclined to believe them except for two things. The MRI report does not mention clots and I am continually developing new symptoms.
My initial residuals include all the usual; muscle weakness (73% deficiency) and spasticty on the left side, facial droop, foot drop, restless leg syndrome, vertigo, trouble speaking in full sentences, short term memory loss, trouble swallowing. I went back to work three weeks after my stroke and had made a near full recovery in the first 12 months. I still have 1+ muscle weakness, restless leg and short term memory loss.
Since the first year--it is now 4 1/2 years later--I have the most god awful migraines that last a week at a time. I went through a period where I itched so bad I wanted to tear my skin off. Which often feels like it it two sizes too small. Then came the feeling that I had fallen into a cactus, which was followed by my clothes feeling like sandpaper.
Over the past year, I have had the weirdest pains and sensations in my head and scalp, an asthma attack for the first time in 41 years that landed me in the hospital for a week. This is when I also developed bladder control issues. Every time I cough... I now have a persistant cough with spells where I cough so hard I think I've given myself a hernia. I'm seriously considering buying stock in Poise.
Two months ago, I became a human weeble--I wobble but I'm able to catch myself before I fall down.
Two weeks ago, I developed tremors in my hands, a vibrating sensation in my feet and legs, and my face and arms feel like I have a bad sunburn.
One week ago, I went to the hospital by ambulance feeling as though someone was trying to seperate my skull from my spine with a crow bar. The EMT tried three times to start an IV on me he says he got in the vein all three times. I sware he went through the vein and into the muscle, it hurt so bad. It took the ER two tries to get a line in. And then they loaded me up with morphine, which did not a darn thing to relieve my headache. But the next time they drew my blood, I didn't feel a thing.
Subsequently, the new MRI of my brain and neck showed no new lesions. The carotid doppler showed no blood flow problems and I promise you I felt every bit of the nerve conductivity test! Which reminds me--I occasionally experience mild electrical shock sensations in my left leg.
My pillow feels like a pin cushion against my cheek. And my eyes. Sometimes its like looking through a dirty contac lens. Sometimes I have this bright pink spot in the center of field of vision. When I open my eyes in a dark room I see bright flashes of light.
But according to my doctor I don't have MS. Is he right? Do any of my symptoms sound familiar to any of you? I have requested to be sent to a different neurologist for yet another opinion. What sort of questions should I be asking? What demands should I be making?
Suggestions are no only welcomed they will be greatly appreciated. Thank you.
MRick
This is my first post so let me start by apologizing for it's length. I'll try to keep it concise.
I broke my leg in a car crash in 9/05 and subsequently developed a PE. In 7/06, I suffered a CVA. The MRI report does state that I have a 1.3 x 1.1 cm acute/subacute infarct on the right side of the pons with no hemorrage identified. It also states that I have a mild patchy foci of T2 and FLAIR signal hyperintensity in the periventricular and subcortical white matter. The differential diagnoss includes demyelinating disease (MS), vasculitis, and migranes.
I do believe that I had a pontine stroke. Blood tests show that I have a clotting disorder - Prothrombin Gene Mutation. Vasculitis was ruled out with a sed rate. And I can count on one hand the number of migraines I had experienced up to the time of my stroke. That leaves MS. But every doctor I see insists that I had two strokes at one time. They can't seem to get past my clotting disorder. And I might be inclined to believe them except for two things. The MRI report does not mention clots and I am continually developing new symptoms.
My initial residuals include all the usual; muscle weakness (73% deficiency) and spasticty on the left side, facial droop, foot drop, restless leg syndrome, vertigo, trouble speaking in full sentences, short term memory loss, trouble swallowing. I went back to work three weeks after my stroke and had made a near full recovery in the first 12 months. I still have 1+ muscle weakness, restless leg and short term memory loss.
Since the first year--it is now 4 1/2 years later--I have the most god awful migraines that last a week at a time. I went through a period where I itched so bad I wanted to tear my skin off. Which often feels like it it two sizes too small. Then came the feeling that I had fallen into a cactus, which was followed by my clothes feeling like sandpaper.
Over the past year, I have had the weirdest pains and sensations in my head and scalp, an asthma attack for the first time in 41 years that landed me in the hospital for a week. This is when I also developed bladder control issues. Every time I cough... I now have a persistant cough with spells where I cough so hard I think I've given myself a hernia. I'm seriously considering buying stock in Poise.
Two months ago, I became a human weeble--I wobble but I'm able to catch myself before I fall down.
Two weeks ago, I developed tremors in my hands, a vibrating sensation in my feet and legs, and my face and arms feel like I have a bad sunburn.
One week ago, I went to the hospital by ambulance feeling as though someone was trying to seperate my skull from my spine with a crow bar. The EMT tried three times to start an IV on me he says he got in the vein all three times. I sware he went through the vein and into the muscle, it hurt so bad. It took the ER two tries to get a line in. And then they loaded me up with morphine, which did not a darn thing to relieve my headache. But the next time they drew my blood, I didn't feel a thing.
Subsequently, the new MRI of my brain and neck showed no new lesions. The carotid doppler showed no blood flow problems and I promise you I felt every bit of the nerve conductivity test! Which reminds me--I occasionally experience mild electrical shock sensations in my left leg.
My pillow feels like a pin cushion against my cheek. And my eyes. Sometimes its like looking through a dirty contac lens. Sometimes I have this bright pink spot in the center of field of vision. When I open my eyes in a dark room I see bright flashes of light.
But according to my doctor I don't have MS. Is he right? Do any of my symptoms sound familiar to any of you? I have requested to be sent to a different neurologist for yet another opinion. What sort of questions should I be asking? What demands should I be making?
Suggestions are no only welcomed they will be greatly appreciated. Thank you.
MRick
LPs are not that bad. It is the one test that would be hard to explain away. I there are OC Bands, there is an immunologic process going on in the CNS.
The idea of an evolving stroke has to do with neuroplasticity. As the brain attempts to rewire itself, it can cause some very odd and hard to explain symptoms. I once met a gentleman in a hospital that when he heard certain sounds would see different colors. It is a strange symptom called synesthesia. As the brain heals after a stoke, all kinds of strage stuff can pop up in the process.
The idea of an evolving stroke has to do with neuroplasticity. As the brain attempts to rewire itself, it can cause some very odd and hard to explain symptoms. I once met a gentleman in a hospital that when he heard certain sounds would see different colors. It is a strange symptom called synesthesia. As the brain heals after a stoke, all kinds of strage stuff can pop up in the process.
Thank you for your two cents worth. It is much appreciated.
They did MRI my c-spine when they did the last brain MRI. No lesions. The t-spine brings up more questions. I have 13 year old herniations between T8, T9 and T10. At this late date, could this be causing some of my symptoms?
As for migraine disease, before my stroke the times I did have a migrain it was induced by sunlight hitting my eye at just the right angle. I would see the aura start, take 3 extra strength Tylenol and that was it. No pain, no nausea, nothing. Now, if I don't take my Sumatriptan at the first sign of a migraine, I'm praying for death!
I know this isn't a stroke forum, but my neuro insists that my stroke is "evolving". I have no idea what that means. Do you?
Anyway, I will definately ask for the t-spine MRI and a VEP. However, I think I'll keep the LP as a last resort. I've heard too many horror stories!
Thanks again for the advice.
MRick
They did MRI my c-spine when they did the last brain MRI. No lesions. The t-spine brings up more questions. I have 13 year old herniations between T8, T9 and T10. At this late date, could this be causing some of my symptoms?
As for migraine disease, before my stroke the times I did have a migrain it was induced by sunlight hitting my eye at just the right angle. I would see the aura start, take 3 extra strength Tylenol and that was it. No pain, no nausea, nothing. Now, if I don't take my Sumatriptan at the first sign of a migraine, I'm praying for death!
I know this isn't a stroke forum, but my neuro insists that my stroke is "evolving". I have no idea what that means. Do you?
Anyway, I will definately ask for the t-spine MRI and a VEP. However, I think I'll keep the LP as a last resort. I've heard too many horror stories!
Thanks again for the advice.
MRick
I'm sure Quix will answer when she sees this, but in the mean time, I'll make a few comments. First, Welcome to the forum.
It is great that you were able to survive the pons infarct. The foci in the periventricular and subcortical white matter seems to be either a singular demyelinating lesion or evidence of migraine disease. Your latest brain MRI showed no additional lesions. Since you seems to Lhermitte's Sign, have they done an MRI of your c-spine and t-spine?
There have been a few folks with very few brain lesions, but significant problems due to c-spine and t-spine lesions.
The fact that you had a CVA will complicate the possible diagnosis of MS, because a CVA is a possible mimic for MS.
Given the pons infarct, I'd think a VEP and possibly a lumbar puncture might be reasonable tests. If OC Bands were detected in the LP, I'd say that they would be looking for something besides an infarct. A pons infarct is not going to cause the generation of unique antibodies in the CNS.
Just my two cents worth,
Bob
It is great that you were able to survive the pons infarct. The foci in the periventricular and subcortical white matter seems to be either a singular demyelinating lesion or evidence of migraine disease. Your latest brain MRI showed no additional lesions. Since you seems to Lhermitte's Sign, have they done an MRI of your c-spine and t-spine?
There have been a few folks with very few brain lesions, but significant problems due to c-spine and t-spine lesions.
The fact that you had a CVA will complicate the possible diagnosis of MS, because a CVA is a possible mimic for MS.
Given the pons infarct, I'd think a VEP and possibly a lumbar puncture might be reasonable tests. If OC Bands were detected in the LP, I'd say that they would be looking for something besides an infarct. A pons infarct is not going to cause the generation of unique antibodies in the CNS.
Just my two cents worth,
Bob
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