Aa
Possible chiari
Hi guys
Not sure if this is where I need to ask or even if you guys can help?
I've had a build up of symptoms which I am convinced is Ms, however so far the MRIs have been clear.
The radiologist who did the one mri suggested she could see low lying cerebellar tonsils, however this was not reported.
I wonder if you could tell me if these sympotks could be caused by chiari -
Lhermitte's sign
Tingling left hand
Tingking burning feet
Crampy tight hamstrings, thighs and calls along with stiff legs
My arms often feel constricted and ache almost from the shoulder neck area to the wrist and hand
I wake up often with my arms being tingking numb too
All this has happened over the space of 4 months! It's terrifiying me because it doesn't look like relapsing Ms but is also very quick form orogressive Ms so chiari is one other option?
One other thing, if there is a syrinx do you feel pain at the site of syrinx? I have pain when bending or exting back at the spine halfway up, it's also painful to touch
I've always had headaches if I strain for toilet etc too but short lasting that almost knockme off my feet
Not sure if this is where I need to ask or even if you guys can help?
I've had a build up of symptoms which I am convinced is Ms, however so far the MRIs have been clear.
The radiologist who did the one mri suggested she could see low lying cerebellar tonsils, however this was not reported.
I wonder if you could tell me if these sympotks could be caused by chiari -
Lhermitte's sign
Tingling left hand
Tingking burning feet
Crampy tight hamstrings, thighs and calls along with stiff legs
My arms often feel constricted and ache almost from the shoulder neck area to the wrist and hand
I wake up often with my arms being tingking numb too
All this has happened over the space of 4 months! It's terrifiying me because it doesn't look like relapsing Ms but is also very quick form orogressive Ms so chiari is one other option?
One other thing, if there is a syrinx do you feel pain at the site of syrinx? I have pain when bending or exting back at the spine halfway up, it's also painful to touch
I've always had headaches if I strain for toilet etc too but short lasting that almost knockme off my feet
COMMUNITY LEADER
An LP at times is medically necessary, it is ok to have one but it is important that the person doing the LP knows you have Chiari and to draw the fluids slowly....drawing them too fast can pull on the cerebral tonsils and cause more of an obstruction and change symptoms....
Just make sure they know your Chiari DX.
Hi Selma
I was wondering if an LP is ok for someone who might have chiari?
I am hoping ad prying it's anyyhing but Ms right now
I was wondering if an LP is ok for someone who might have chiari?
I am hoping ad prying it's anyyhing but Ms right now
Hi Selma
Not had the LP yet I think it'll be next week sometime
My original neuro does the Lp himself apparently
I guess if it's ms and progressive as I fear then the LP will give some idea if it is and the potential severity based on the number of banda
Not had the LP yet I think it'll be next week sometime
My original neuro does the Lp himself apparently
I guess if it's ms and progressive as I fear then the LP will give some idea if it is and the potential severity based on the number of banda
COMMUNITY LEADER
Did they do a LP to look for banding of the blood?
I know those are definitive tests for MS and I know the symptoms are so similar that DX can get difficult...
Good luck with the 2nd opinion....but keep in mind if this NS is not a specialist you may hear some of the same things the last one said...I saw a few as well...and the one I chose to do my surgery was the 4th....
I'll try get copies of the mri and see what they're like
I've got a second opinion with a neuro next week so I'll see what he says
It looks more like Ms but with no lesions at all they can't diagnose it
I've got a second opinion with a neuro next week so I'll see what he says
It looks more like Ms but with no lesions at all they can't diagnose it
COMMUNITY LEADER
Some Drs do not recognize Chiari and consider it an incidental finding so it is possible some Drs will say the MRI is clear while others will DX Chiari....
If you have your copies of the MRI you can forward to a true Chiari specialist for review. Some will do this free of charge while others may charge a nominal fee.
Mri come back clear
Hi guys
as you know ive had a build up of symptoms that look like Ms, had a scan in January clear and just had one a week ago and got results today. They state compared to last scan no abnormality found on brain, cervical cord signal is normal, little disc degeneration but no significant protrusion!
what do I do now? This is freaking me out, I should be so happy and I wan except IVE got these symptoms that won't go away, plus they're worsening in areas add to it lhwrmittes with no explanation! What should I do next
Could it be chiari as mentioned by the radiographer?
Hi guys
as you know ive had a build up of symptoms that look like Ms, had a scan in January clear and just had one a week ago and got results today. They state compared to last scan no abnormality found on brain, cervical cord signal is normal, little disc degeneration but no significant protrusion!
what do I do now? This is freaking me out, I should be so happy and I wan except IVE got these symptoms that won't go away, plus they're worsening in areas add to it lhwrmittes with no explanation! What should I do next
Could it be chiari as mentioned by the radiographer?
COMMUNITY LEADER
It is possible as pain as you mentioned is common for those with Chiari...when laughing, sneezing..etc...
The pain with coughing , laughing or sneezing is not a long lasting pain...but it lets you know it is there....
It is more important to get a firm DX and see a Dr to know just what all is going on as we can speculate all day...each of us can be affected differently....the thing is to remain calm and wait to see what your Drs have to say.
One other thing I get extreme pain in my shoulders and neck when I sneeze but only for anout 15 seconds is that fro
Chiari?
Chiari?
Are you referring to ccsvi?
Thankyou for the advice, like I say I want a chance at fighting whatever it is and With orogressive Ms and indeed rapid orogressive
There is no time and a bad prognosis
Thankyou for the advice, like I say I want a chance at fighting whatever it is and With orogressive Ms and indeed rapid orogressive
There is no time and a bad prognosis
Hi Krispt,
Trying to post you back w/o success this evening. This is a great site for Chiari and more generally compression symptoms. I understand your legitimate concerns- although MS is not a disease that you have no future with by any means. I don't wish to get too technical here; however, there are "subsets" of MS that have a mechanical etiology; iow, a mechanical reason why these patients experience such diffuse neurological symptoms. It is due to anomalies in the blood vessels that supply the brainstem. Similarly, spinal cord compression syndromes can exhibit identical symptoms as well. Document everything you experience, become a self-advocate, and find high quality practitioners to assist you. I know this can feel nothing short of bizzare and overwhelming. You are not alone. I hope to have time to contribute meaningfully and practically to this blog in the future. DrD
Trying to post you back w/o success this evening. This is a great site for Chiari and more generally compression symptoms. I understand your legitimate concerns- although MS is not a disease that you have no future with by any means. I don't wish to get too technical here; however, there are "subsets" of MS that have a mechanical etiology; iow, a mechanical reason why these patients experience such diffuse neurological symptoms. It is due to anomalies in the blood vessels that supply the brainstem. Similarly, spinal cord compression syndromes can exhibit identical symptoms as well. Document everything you experience, become a self-advocate, and find high quality practitioners to assist you. I know this can feel nothing short of bizzare and overwhelming. You are not alone. I hope to have time to contribute meaningfully and practically to this blog in the future. DrD
Hi thankyou
I am hoping it's something treatable as currently it looks more likely to be a rapidly progressive Ms which I will have no future with
I am hoping it's something treatable as currently it looks more likely to be a rapidly progressive Ms which I will have no future with
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
YES, YES YES....with Chiari you can have just about any symptom as it affects your spinal cord and all the nerves flow thru there....
MS is often MISDX'd for those that have Chiari.....as the symptoms are similar and one Dr has stated that there are more people with Chiari then MS....it is just that MS is more widely known.
With any issue invoving nerves you can have referred pain...not always at the site of the issue/syrinx....but it is not impossible either....
Educate yourself on Chiari and ALL related conditions....find a true Chiari specialist....and keep in mind your families medical history and it is possible to have more then one condition at time....
Lastly know you are not alone.
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