I've been feeling terrible, really bad. LLMD had put me on Plaquenil and I thought it triggered a herx. Hasn't helped at all. Went to a neurologist wanted an MRI due to extreme heachaches, which i do get fm my Lyme but these were a little different. My sinus's are kicking up EXTREMELY bad and my glands are so swollen, non stop since Aug. Alot of nausea lately too. Mostly though felt like Lyme symtoms getting alot worse. I get my MRI results, today, and the neuro doc tells me I need a neck MRI because of low lying cerebellar tonsils. Of course I investigate EVERYTHING I'm told medically. I find out that I could have a condition called Chiari type 1 malformation. Its when the back part of the brain droops down and presses on the spinal cord and the pressure of the fluid builds up in your head. The script she wrote for the neck MRI indicated that condition and needs to rule out Syringomyelia which is damage to the spinal cord fm the Chiari Type 1. My written report of the brain MRI also indicated Chiari type 1 malformation.
After researching these conditions I am finding out that the list of symptoms is basically the same as Lyme, MS, CFS and Fibromyalgia. alot of patients are misdiagnosed with MS and actually have this Syringomyelia. If the Chiari is not addressed and left undiagnosed it will cause the Syring and that will cause irreversable neurological damage. Depending on the extent of the Chiari they could order meds or surgery to release the pressure of the fluid build up. If your diagnosed with Syringomyelia (which i will know friday), surgery is absolutely necessary. They have to remove a piece of bone fm the back of your skull to allow room for the fluid not to build up.
I am shocked, upset and beside myself. If I did not pursue the neuro work up on my own I would've never known this and thought my Lyme was getting worse and basically never leaving my body. The information says so many people are diagnosed as having the CFS and Fibromyalgia because of the symptoms that docs don't and won't normally do a brain mri. Now because of getting brain MRI's for other reasons it is being discovered, which was my case. Minimal chiari type 1 is 5mm or less. Mine are 10mm so I am very afraid surgery may be recommended as well as afraid I have the Syring which then surgery is absolutly necessary.
to top it all off my family doc reported my mri results as "normal". It was the neurologist who called me herself to tell me the results and immediately ordered the mri and the ins cert that was needed.
If you have anything like this going on and have not have a brain mri pls ask for one. Also if you did have a brain mri at one point and nothing was mentioned, pls get a copy of your written report and see what was written in there.
Posted by dmc (Member # 5102) on :
My sister had that DX...turned out Lyme caused it. Inflammation caused brain to "leak" into spinal area.
Our LLMD had a few patients w/it...treatment stopped it & reversed it for my sister Next MRI showed no chiari.
If you neuro is not a LLneuro then get one. You won't feel so freaked, nor panicky. They've seen it all w/Lyme doing weird things.
Posted by Lymetoo (Member # 743) on :
Hope you get to the bottom of this.... and hope you won't need surgery!
Also.. it's been discussed here before. You may benefit from doing a search here.
Posted by climber (Member # 26330) on :
I also hope that you will not need any type of intervention and that you can settle this somehow. I am aware of that condition and also know the best doctor in the country for treatment. He is known as one of the top three in the world for this potential condition. It is rare, but PM me if you want his name. climber
Posted by sbh93 (Member # 30429) on :
Yes, please don't panic. I had an abnormal MRI, was sent to a far-away neuro for an invasive test that only certain hospitals will do, cost my insurance a house, and then it was all blamed on lyme. Two months of walking around thinking I could die at any moment. I will not allow another test result to terrify and sideline me the way that one did.