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Lots of Chiari symptoms-What do you think?
Hi everyone. I am a first-time poster, long-time reader.
My symptoms started in September 2009 and have slowly evolved into this crazy thing that has left me sitting at home most days unable to work or enjoy life at all. I feel like I am going crazy. I am getting married in September 2010 and would love to figure out what is going on soon so that I can enjoy this time in my life. Just so you know, I am a 28 year old female who up until now has not had that many health issues I will list my symptoms below with a brief description or time period as to when it started. Any suggestions or comments will be greatly appreciated. Thanks in advance.
Ringing in ears, pupils vary in size- Have had this for as long as I can remember
Neck and back pain- Have had for the past 3-4 years. I had a bad whiplash from someone who rear ended me about 7 years ago.
Dry lips- September 2009
Headaches & Migraines- September 2009
Excessive Thirst and Frequent Urination- November 2009
Dizziness, Confussion, Loss of appetite, Irritable, Anxiety, Fatique, clumsy- November 2009
Weight Loss- Have lost around 15 pounds (I am rather small, usually weighing around 130.)
Chest, legs and arms ache- January 2010
Lots of clear drainage in ears and throat
Blood pressure drops when standing after lying down otherwise is a little high
I have become very week. I have nausea all of time . I am ALWAYS cold (hands and feet mostly).
I have been to an endocrinologist, neurologist a kidney specialsit and of course my family doctor. The neurologist diagnosed me with chronic migraines.I have been on amitriptyline and topamax for the migrianes- neither helped that much, so I stopped taking them. Last week I found out that I am slightly anemic and have a low white blood count. The endo and kidney dr both told me that they know something is wrong, but they are not sure what. The endo actually told me to consider Mayo Clinic. I had an MRI and a CAT Scan- both came back okay. It just said that I minimal mucosal thickening. That being said, should I rule out Chiari even though I have a lot of the symptoms?
As I said before, any help would be greatly appreciated. Thank you!!
My symptoms started in September 2009 and have slowly evolved into this crazy thing that has left me sitting at home most days unable to work or enjoy life at all. I feel like I am going crazy. I am getting married in September 2010 and would love to figure out what is going on soon so that I can enjoy this time in my life. Just so you know, I am a 28 year old female who up until now has not had that many health issues I will list my symptoms below with a brief description or time period as to when it started. Any suggestions or comments will be greatly appreciated. Thanks in advance.
Ringing in ears, pupils vary in size- Have had this for as long as I can remember
Neck and back pain- Have had for the past 3-4 years. I had a bad whiplash from someone who rear ended me about 7 years ago.
Dry lips- September 2009
Headaches & Migraines- September 2009
Excessive Thirst and Frequent Urination- November 2009
Dizziness, Confussion, Loss of appetite, Irritable, Anxiety, Fatique, clumsy- November 2009
Weight Loss- Have lost around 15 pounds (I am rather small, usually weighing around 130.)
Chest, legs and arms ache- January 2010
Lots of clear drainage in ears and throat
Blood pressure drops when standing after lying down otherwise is a little high
I have become very week. I have nausea all of time . I am ALWAYS cold (hands and feet mostly).
I have been to an endocrinologist, neurologist a kidney specialsit and of course my family doctor. The neurologist diagnosed me with chronic migraines.I have been on amitriptyline and topamax for the migrianes- neither helped that much, so I stopped taking them. Last week I found out that I am slightly anemic and have a low white blood count. The endo and kidney dr both told me that they know something is wrong, but they are not sure what. The endo actually told me to consider Mayo Clinic. I had an MRI and a CAT Scan- both came back okay. It just said that I minimal mucosal thickening. That being said, should I rule out Chiari even though I have a lot of the symptoms?
As I said before, any help would be greatly appreciated. Thank you!!
Yeah, after reading that they were looking for something else...I would get a NS to look at the pics. Like I said..it happened to me and wasn't noticed until I saw a NS.
Glad we could help...good luck in getting some answers!
Carolyn
Glad we could help...good luck in getting some answers!
Carolyn
Thank you so much for all of your help!! =)
COMMUNITY LEADER
I understand that and it is possible it was overlooked bcuz of it......but it can only be seen in the cervical and brain , CINE MRI's.......
The lumbar might show itf u had tethered cord.....but doesn't always show on an MRI.
I also have the schmorls nodes too......
All u can do is have someone review the Brain MRI's.
The lumbar might show itf u had tethered cord.....but doesn't always show on an MRI.
I also have the schmorls nodes too......
All u can do is have someone review the Brain MRI's.
I had a MRI Lumbar Spine, the only findings were: Minimal lower lumbar facet arthritis. Scattered Schmorl's nodes were identified in the lumbar spine and lower thoracic spine.
That being said, again they were not looking for Chiari when doing this test.
That being said, again they were not looking for Chiari when doing this test.
COMMUNITY LEADER
HI...yes a brain MRI w/wo contrast can detect chiari...we also do need MRI's of the cervical , thoracic and lumbar spine.And a CINE MRI to look for CSF blockages.Do u have the MRI's?
It is possible sine they were not looking for it that it was not included on the report.
U deff want them to review to rule it out.....
It is possible sine they were not looking for it that it was not included on the report.
U deff want them to review to rule it out.....
One more thing. The MRI that I did was not looking for Chiari, they were actually looking for a brain tumor at the time.
It was an MRI of the brain with and without contrast. Is this the type of MRI I would need in order to diagnose Chiari?
Here are the findings from the MRI- The brain and ventricles are symmetrical. There is expected flow-void in the basilar artery and in the distal aspect of the internal carotid arteries bilaterally. There isd mucosal thickening, mild, involving the right mastoid sinus superiorly. There was no evidence of fluid within the paranasal sinuses.
There was no evidence of an intracranial mass or area of abnormal enhancement after contrast administration.
It was an MRI of the brain with and without contrast. Is this the type of MRI I would need in order to diagnose Chiari?
Here are the findings from the MRI- The brain and ventricles are symmetrical. There is expected flow-void in the basilar artery and in the distal aspect of the internal carotid arteries bilaterally. There isd mucosal thickening, mild, involving the right mastoid sinus superiorly. There was no evidence of fluid within the paranasal sinuses.
There was no evidence of an intracranial mass or area of abnormal enhancement after contrast administration.
Wow!! Thanks to everyone! You guys are wonderful! I am going to check on all of things that you have mentioned and will let you all know how it turns out.
COMMUNITY LEADER
Hi and welcome to our little family here : )
It is so hard to say to consider u have it until it and several other things r ruled out.
Were u tested for lymes, lupus, MS?I was and the reason is the conditions all have similar symptoms....many times we get misdx'd bcuz of that.
Ur MRI could have been mis read....and Chiari may not be what they were looking for, and finally....chiari may not be something they were informed of in school except for old thoughts which make a finding incidental so u r normal in their eyes.
As everyone else has said get copies of ur MRI and reports and get a second opinion from a chiari specialist.....
And like Carolyn has mentioned chiarians if indeed u r one of us, tend to have autoimmune and connective tissue issues so do check for all that can be going on....including DDD, stinosis, Tethered cord, EDS, syrinx.
I pray u get answers soon
"selma"
It is so hard to say to consider u have it until it and several other things r ruled out.
Were u tested for lymes, lupus, MS?I was and the reason is the conditions all have similar symptoms....many times we get misdx'd bcuz of that.
Ur MRI could have been mis read....and Chiari may not be what they were looking for, and finally....chiari may not be something they were informed of in school except for old thoughts which make a finding incidental so u r normal in their eyes.
As everyone else has said get copies of ur MRI and reports and get a second opinion from a chiari specialist.....
And like Carolyn has mentioned chiarians if indeed u r one of us, tend to have autoimmune and connective tissue issues so do check for all that can be going on....including DDD, stinosis, Tethered cord, EDS, syrinx.
I pray u get answers soon
"selma"
Hello and welcome,
Just curious...when they said that your MRI came out fine, were they looking for Chiari specifically or something else? If they weren't looking for Chiari then it could have been easily missed or cited as incidental...this has happened to many of us including myself (they were looking for MS and missed the Chiari). I would definitely take the advice of those above and get a copy of the pictures and report!!
Another thing that caught my attention is the dry lips and excessive thirst (possibly a dry mouth?). Post surgery as things started to clear I starting seeing some symptoms that had got better and some that hadn't. I noticed I was having a very dry mouth making me very thirsty, very dry itchy eyes with under eye swelling, lymph nodes that would swell up and down and I still had joint and muscle pain and headaches that were focused at the top and front of my head. I got to thinking that there could be more than one thing going on so I went back to my doctor to ask for more tests. I had an ANA test which ended up being positive so now they are trying to narrow it down to whether its possible that I have Lupus, Hashimotos or Sjorgrens (all autoimmune diseases). When I looked them up I was amazed to see that many of the symptoms for these diseases are the same as for Chiari but that they may explain some of the ones that aren't. So the reason I am telling you all this is that if you haven't already, I would ask to get an ANA test done to rule that out. It is really a simple blood rec. so your doctor should be fine with getting it done.
Unfortunately, when it comes to health care this is how it works, WE have to figure out what it might be and then go to the doctor and ask for the test!
Good luck to you!
Carolyn
Just curious...when they said that your MRI came out fine, were they looking for Chiari specifically or something else? If they weren't looking for Chiari then it could have been easily missed or cited as incidental...this has happened to many of us including myself (they were looking for MS and missed the Chiari). I would definitely take the advice of those above and get a copy of the pictures and report!!
Another thing that caught my attention is the dry lips and excessive thirst (possibly a dry mouth?). Post surgery as things started to clear I starting seeing some symptoms that had got better and some that hadn't. I noticed I was having a very dry mouth making me very thirsty, very dry itchy eyes with under eye swelling, lymph nodes that would swell up and down and I still had joint and muscle pain and headaches that were focused at the top and front of my head. I got to thinking that there could be more than one thing going on so I went back to my doctor to ask for more tests. I had an ANA test which ended up being positive so now they are trying to narrow it down to whether its possible that I have Lupus, Hashimotos or Sjorgrens (all autoimmune diseases). When I looked them up I was amazed to see that many of the symptoms for these diseases are the same as for Chiari but that they may explain some of the ones that aren't. So the reason I am telling you all this is that if you haven't already, I would ask to get an ANA test done to rule that out. It is really a simple blood rec. so your doctor should be fine with getting it done.
Unfortunately, when it comes to health care this is how it works, WE have to figure out what it might be and then go to the doctor and ask for the test!
Good luck to you!
Carolyn
Hi and welcome to the forum! I totally agree with everything stacey said! You need to get and keep copies of all your tests! You may have to send your mri off to a chiari specialist and get their opinion. Thats what i ended up doing because none of the drs close would help me. Also, are you very flexible or double jointed? I have the cold hands and feet too but its from EDS. Blessings ~ Shannon
Welcome to the forum, Im glad that you posted! No worries with your spelling, no one minds : ) And you are far from dumb. I was wondering if you had obtained a copy of your MRI or CT reports? Sometimes you will find that doctors dont like to tell you about every thing they find. Did they say if you had any other back issues like ddd of facet joint disease? Stacey
Oh and sorry for all of the grammar and/or spelling issues!! =) I hate feeling dumb!! Ha!
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