I'm pending results of my MRI. I'm anxious, and I found this site after looking for some info. I'm hoping to learn from others and get some best practices when dealing with the symptoms
Here's my back story.
I"m 33yrs old - had headaches for a long time, pain in the top of my neck, base of my skull, when I have a flare out the nausea and pain is horrible, including trips to the ER. I have pains in my legs, tightness around my chest (bra line) and it hurts to take deep breathes in.The pain usually starts in the right side but does go to the left side, and the pain goes to the teeth and up my skull to my temples. I have tingles all over my body from toes to head. ( its weird to be walking and feeling your legs tingle) I get shortness of breathe and incontinance
My doctor thinks i could have ms or chiara. I had my MRI yesterday and waiting for the doctor to call me.
I had a friend review my MRI (she has Chiari and is pre med) she said my MRI looks like hers, and she believes I have Chiari.
Since my family doctor first sent me to a neurologist for MS, The NS suggested I get needles in my neck. His words "try the needle if the neck, if they dont' work. come back, i know we are working with something rare" that did not sit well with me. It was my pelvis floor specialist who though about chiari and recommended that i get an MRI.
I spent 3 days last week in bed, and I'm ready for a change. If you have any suggestions on how to deal with things I'd appreciate it.
my NS did not do an MRI or see it. My family doctor asked for it at the request of my pelvic floor specialist.. I want a new NS, because both visits he just recommends shots in my neck for the pain. I want to find the cause.
My doctor called and left a voice message saying my scans were normal. I called her back but she was not available. i want to talk about next steps with her.
I have the discs from the MRI. I'm not sure what im looking at when I look at them.
I'm walking in a dark room with this stuff, I have no medical knowledge and so any direction would be helpful
Today was a tough day. My head is getting tingley, its mainly on the middle right side on the back of the head, and I since I now have Asthma ( that's what my doctor thinks and gave me a puffer for it) I had an asthma attack after walking up a flight of stairs at work. Its embarrassing as this happened in a meeting
The pain in the back and shortness of breathe happens all the time... 5 yrs ago i was running in a 5km race ( i was running 5km under 5 minutes NO breathin problems) and now i can't even walk stairs :(
I was diagnosed with Chiari and your symptoms are similar, but more severe than mine. My brain stem is 6mm low lying. The MRI results should come fast and will easily reveal what is going on with your brainstem. Interestingly, I have an appointment with my doctor for issues I'm having with my pelvic floor. What caused your doctor to make the connection, if there is one, I'm not sure?
I wondered about MS, others have it in my family. My NS is sending me for tests for cerebrovasular disease. Neither of these diagnoses seem to explain my systems as well as Chiari does. Is your surgeon experienced with Chiari? I'm looking into finding someone more experienced in Michigan.
Looking at the date of this post, your must know by now. Let me know what you have found in your MRI.
Did you ever get any medical help? My daughter sounds so similar to you. We are waiting for Neurology appointment and just trying to deal with day to day life.here. It is so sad because she has a hard time consentration. She has missed about two months of school and when she studies for a test to take with her home teacher she tries to read aloud to retain more information and gets winded. Her teacher feels so bad because within about 30 minutes she is totally wasted. She does not have the debilitating headaches as most have. She has headaches but it is more the type she gets when she coughs or sneezes or uses the bathroom etc... Some days she is so week and lifeless. If she has a good day then she pays for it with three or more bad days. I know you must be so frustrated. The only thing i have right now is a radiology report that says "minimal displacement of cerebellar tonsils". Now I have done enough research to know that size does not matter and I just want to get some resolution so when can go in the right direction. Please feel free to write any time and please share your experiences with me. We can learn from each other. I have seen that tremendously onj this site!