Connect
Cause still unknown 7 years in
My daughter just turned 17. We’ve been to various specialists since she was 10 to figure out what was going on. She had had migraines since she was 7. Now there were immune system issues, chronic infections, pneumonia particularly. She was tested and nothing substantial came back. Next it was allergy and GI issues and it just came down to nothing they could find other than elevated IgE levels and GERD. Then a few years ago right before Covid her entire body just shut down. She had no energy could barely make it to school and started having tremors. She was diagnosed with POTS, but nothing substantial came could explain the tremors. During visits it came up that she was had loss of feeling and neuropathy in her hands, arms, and back. The neurologist has been great a realized she is in constant pain and didn’t know it wasn’t normal and was diagnosed with chronic pain. All of these things seem so randomly related but nothing tied together. We’ve had an MRI and CT, and only found a 5 mm Chiari. It’s just difficult to watch her search for answers, when no one seems to know anything.
Like
Helpful
HugInterested in more discussions like this? Go to the Brain & Nervous System Support Group.
Connect
I'm sorry to hear that your daughter is in such distress. It must be terrible for her and your entire family.
Since conventional medicine has had no success, have you considered alternatives? Acupuncture, NAET, EFT, nutrition, hypnosis, anything like that?
Acupuncture and EFT have helped me significantly, especially since my stroke in 2018.
Best of luck to her! There is an answer out there.
My stroke recovery journey: http://www.youtube.com/@srlucado/videos
@mzink325
I looked up Chiari since I wasn’t familiar with it. Have you seen a neurosurgeon to ask about treatment/surgery? See this link about symptoms, diagnosis, and treatment.
https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010
-
Like -
Helpful -
Hug
1 Reaction@mzink325 was a full spine MRI performed? I ask because Chiari can also cause a syrinx (Syringomyelia) to form inside the spinal cord. This can also cause issues. I was diagnosed with a Chiari Malformation which was 17mm and Syringomyelia. I have attached a link for further explanation.
https://www.mayoclinic.org/diseases-conditions/syringomyelia/symptoms-causes/syc-20354771
Hi,
Pots being a form of Dysautonomia I'd be looking into that. I'm dealing with Autonomic polyneuropathy and have very similar symptoms. Some more severe while other features are less invasive. It has taken 12 years and I'm still fighting it, but everyday the events of the past are now making more sence. While I don't get tremors I do have very short periods when I'm paralised and can't move for a few minutes. With the nerves sending and or receiving corrupted messages all manner of side effects can happen and often do. Some have become a permanent features while other come and go randomly.
With so many health issues that can cause a lot of the symptoms, but not quit all, it is difficult to get a diagnosis.
Cheers