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Neurology (Expert Forum)
Had MRI for high anti-PE,PC. Incidental ACM. Related?
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Had MRI for high anti-PE,PC. Incidental ACM. Related?
by ct34, Dec 19, 2000 12:00AM
I am a 42 year old woman.
Have history of transient neurological problems diagnosed as complicated migraine. Three years ago, my sibling developed a chronic, serious auto-immune renal condition after routine surgery. This, plus family history of early stroke and multiple miscarriage led my new GP to refer me to a rheumatologist, to consider auto-immune process.
Blood work normal for lupus and RA. anti-beta 2 IgM borderline high (8); anti-PC and PE extremely high - PC IgG 13 sd, PC IgM 11.2 sd and PE IgA 5 sd.
MRI last week showed no stroke damage. Did find incidental Arnold Chiari malformation.
Question: Are results related or coincidental? ACM seems to cover nicely an otherwise disparate group of symptoms. But, what about the high anti-body levels/probable clotting disorder? Seeing a neuro after Xmas. Curious if you have any insight.
Symptoms:
Observed by MD:
Bilateral numbness of hands and feet, tremor and right side weakness in arm. Eyes "difficulty tracking", possible gait problem. Arthritis in both knees and one elbow. MRI in 1999 ruled out possible MS.
One visual field test triggered temporary loss of right side vision. (Test followed EEG (normal) by about an hour.) Two prior visual field tests were normal. (Opth ordered tests due to spiking intraocular pressure betwen 6 month visits and retinas that "look great for a 70-year-old".)
Labile BP measured in doc office as high as 210/?? - routinely in 185-195 level. Rest of time, normal BP. Two episodes of fecal impaction, one of near loss of bowel control.
Brother with renal condition was definitively diagnosed with "idiopathic daytime sleepiness" by sleep center. Very low sleep latency.
Outside doc office: all episodic: transient blindness on positional change, fluctuating hearing, sleep apnea? (sudden awakening with loud gasp, pounding heart, sometimes followed rythmic flapping of both feet for 45-60 seconds, one-sided facial numbness, one-sided impairment in finding body parts - "touch nose, touch ear, etc."); slurred speech noted by others; dragging foot; general problems with dropping things and clumsiness; short episodes of extreme confusion and short term memory disruption. Single episode of searing electrical charge down spine following 5-7 minute blackout. (Episoically, I have extreme need to lie down and "sleep" for short periods.) Pounding exertional headaches. Episodic heart problems and extreme shortness of breath; heart palpitations (family history of arythmia). Splinter hemorrages in left hand. (Thumb and index finger only.)
Have history of transient neurological problems diagnosed as complicated migraine. Three years ago, my sibling developed a chronic, serious auto-immune renal condition after routine surgery. This, plus family history of early stroke and multiple miscarriage led my new GP to refer me to a rheumatologist, to consider auto-immune process.
Blood work normal for lupus and RA. anti-beta 2 IgM borderline high (8); anti-PC and PE extremely high - PC IgG 13 sd, PC IgM 11.2 sd and PE IgA 5 sd.
MRI last week showed no stroke damage. Did find incidental Arnold Chiari malformation.
Question: Are results related or coincidental? ACM seems to cover nicely an otherwise disparate group of symptoms. But, what about the high anti-body levels/probable clotting disorder? Seeing a neuro after Xmas. Curious if you have any insight.
Symptoms:
Observed by MD:
Bilateral numbness of hands and feet, tremor and right side weakness in arm. Eyes "difficulty tracking", possible gait problem. Arthritis in both knees and one elbow. MRI in 1999 ruled out possible MS.
One visual field test triggered temporary loss of right side vision. (Test followed EEG (normal) by about an hour.) Two prior visual field tests were normal. (Opth ordered tests due to spiking intraocular pressure betwen 6 month visits and retinas that "look great for a 70-year-old".)
Labile BP measured in doc office as high as 210/?? - routinely in 185-195 level. Rest of time, normal BP. Two episodes of fecal impaction, one of near loss of bowel control.
Brother with renal condition was definitively diagnosed with "idiopathic daytime sleepiness" by sleep center. Very low sleep latency.
Outside doc office: all episodic: transient blindness on positional change, fluctuating hearing, sleep apnea? (sudden awakening with loud gasp, pounding heart, sometimes followed rythmic flapping of both feet for 45-60 seconds, one-sided facial numbness, one-sided impairment in finding body parts - "touch nose, touch ear, etc."); slurred speech noted by others; dragging foot; general problems with dropping things and clumsiness; short episodes of extreme confusion and short term memory disruption. Single episode of searing electrical charge down spine following 5-7 minute blackout. (Episoically, I have extreme need to lie down and "sleep" for short periods.) Pounding exertional headaches. Episodic heart problems and extreme shortness of breath; heart palpitations (family history of arythmia). Splinter hemorrages in left hand. (Thumb and index finger only.)
Doctor's Answer
by CCF Neuro[P] MD, RPS, Dec 20, 2000 12:00AM
Dear CT34:
Sorry that your having problems. I am not sure what to tell you as I can't look at the Arnold Chiari Malformation. I would not be suprised as you have a meningomyolcele, herniation of the medulla and 4th ventricle into the spinal column, likely abnormal neuronal migration, etc. But, I am thinking that you mean Chiari I malformation not Arnold Chiari Malformation (these are two different entities). Unless the Chiari I malformation is significant, the vast majority of people do not suffer symptoms. Is your malformation highly significant or read as an incidental finding? Many of your symptoms might be better explained on your autoimmune condition, antiphosholipid syndrome (?). I would first pusue this and correct what you can medically before walking down the Chiari I malformation etiology for your symptoms.
Sincerely,
CCF Neuro MD
Sorry that your having problems. I am not sure what to tell you as I can't look at the Arnold Chiari Malformation. I would not be suprised as you have a meningomyolcele, herniation of the medulla and 4th ventricle into the spinal column, likely abnormal neuronal migration, etc. But, I am thinking that you mean Chiari I malformation not Arnold Chiari Malformation (these are two different entities). Unless the Chiari I malformation is significant, the vast majority of people do not suffer symptoms. Is your malformation highly significant or read as an incidental finding? Many of your symptoms might be better explained on your autoimmune condition, antiphosholipid syndrome (?). I would first pusue this and correct what you can medically before walking down the Chiari I malformation etiology for your symptoms.
Sincerely,
CCF Neuro MD
Most of your symptoms are not uncommon to Chiari malformation. I presume that "incidental ACM" refers to the fact that you have some cerebellar tonsillar herniation but that the radiologist thinks it has nothing to do with your problems - or perhaps that the herniation is not significant enough to cause symptoms.
Well, please see a Chiari "expert" if you want proper evaluation for Chiari malformation if your doctors tell you it's irrelevant to your problems. It does seem that there are asymptomatic people with cerebellar tonsillar herniation, but it's also true that there are people with no or minimal herniated tonsils who are very symptomatic.
My daughter had low-lying tonsils but they did NOT extend below the level of the foramen mangum (i.e., no herniation - 0mm). She was very symptomatic (progressive), only 2 doctors of many diagnosed Chiari I and decompression surgery alleviated her many symptoms. She is about 95% better today, 2 years post-op. We travelled all over Canada and the U.S. before we got satisfaction. She had been undiagnosed and misdiagnosed for 5 years and her respiratory problems were approaching a dangerous level before she was diagnosed and then treated. She had these symptoms pre-op:
disordered upward eye movement
nystagmus
occasional blindness
occasional color blindness
constant tearing of eyes
double vision
apnea
choking/gagging
sleep apnea
dysphasia (swallowing problems)
hypersensitivity to noise
hearing difficulties
tinnitus
headaches
neck/shoulder pains
tremors
head sweats
fatigue
tingling/pain/weakness in legs
...and probably more I can't recall now.
Chiari I malformation is traditionally defined as descent of the cerebellar tonsils below the level of the foramen magnum - the generally accepted amount of descent which can contribute to symptoms is 5mm - there is also plenty of disagreement on what symptoms it can cause and how much herniation is required before you can be symptomatic. To put it in layman's terms - it's poorly understood! However, there have been some recent important findings regarding Chiari malformation.
Tonsillar herniation is only one factor to consider when diagnosing Chiari I, and it is not a requirement. Milhorat et al published "Chiari I malformation redefined" in the established medical journal, Neurosurgery, May 1999. They have discovered and defined several factors which must be considered in making the Chiari I diagnosis. They found that 9% of their 364 symptomatic patients had less than the 5mm tonsillar herniation. In fact, the only criteria found among 100% of the patients was obliteration of the CSF (cerebro-spinal fluid) spaces posterior and lateral to the cerebellum. It seems the main problem in Chiari patients is that the lower back part of the skull (posterior fossa) is smaller than normal, causing compression on neural tissue and restricting proper CSF flow. Most doctors don't know how to properly evaluate this. We had over a dozen docs tell us our daughter had no Chiari I - she didn't have tonsillar herniation but she did meet the new criteria.
Chiari can cause a whole host of symptoms. Some only have headaches - others, such as my daughter have in the order of 20-30 symptoms, and I've heard many others mention in the order of 50-100!
All of what I'm telling you is somewhat controversial. Most doctors either don't know about the newer findings yet, don't understand it or just plainly refuse to believe it. They learnt it one way back in med school and they're sticking to it. However, it's your health - seek the best! We did and we're glad we did. My daughter may not be here today were it not for the 2 doctors. There are other Chiari "experts" out there but they are not many. If your herniation is less than 5mm, you will probably have a hard time finding a doctor who will consider it significant because that's the only criteria they use. If it's more than 5mm, then you'll probably get differing opinions - some may say it's significant, others not.
I can't comment on high anti-PE,PC as I don't know about this.
If you need more information, please feel free to contact me at ***@****. Regards.