Posted 7/3/2014 10:30 PM (GMT 0)
Hi Girlie,
I was made aware of this "syrinx" way back in 2003, not one doctor was concerned about it. They were looking for MS lesions in my spine, which there were none.
Brain MRI showed many lesions, which led to an MS diagnosis. I was negative for og bands in spinal tap, and was negative in evoked potential testing. However, I had a positive EMG, twice. They drove needles in my spine, and could never explain the severe pain and loss of my right leg.
So, I was bedridden and in so much pain that water poured out of my feet. My MS doctor insisted that I was "a mild case" and figured I was spoiled housewife intolerant to a little pain. Ughhh, another doctor wanted a Cat Scan, and it was found that my femoral nerve was herniated. It is a rare type of herniation called a "Far Lateral Disc Herniation" that is commonly missed on MRI, etc. It must be diagnosed clinically by extreme pain.
After 6 months, I underwent surgery, and could walk the next day. My calf never recovered and my right leg is numb off and on, pain up and down.
I cannot explain how or where the syrinx came from.....but I do remember lying in bed, crying in pain when my spinal pain at L4/L5 was overtaken by worse pain in my thoracic spine. I will always remember that, and always wondered if syrinx formed then from "trauma", which I've read for years.
Well, I'm sure you can imagine that things went from bad to worse once I had Copoxone shots, heavy IV Solumedrol steroids, so many prescription drugs for everything and anything. After 4 years, my PCP made arrangements for a visit to Cleveland Clinic. The MS specialist shocked my husband and me by reversing diagnosis of MS, and after many more specialist in every area of medicine I was back home with no answer.
At this point I actually was begging to die, cranial nerve tremor left me in a vegetable type state, and I'm still suffering even now with it. I've had every symptom on the Lyme Master Symptom List, every one.
In 2007, after a year with no doctors, I ended up with a severe tooth abcess. One of my first symptoms was jaw pain, and I assumed it was just a bad attack. The dental assistant told me that she had 2 friends with Lyme disease, and I was stunned. For the first time in years, I had some relief because of the anitbiotics from the tooth infection, and some hope.
"There is no Lyme in Michigan!', if only I had a dollar for every health care provider that mistakenly told me that! This was almost 10 years ago, and I've been a Lyme patient since.
Now, I'm so confused again. This MTHFR gene thing is so complicated, and apparently a "sryinx" is considered a neural tube defect and seen with these mutations.
I know nerve pain is the worst....well, hip pain is bad, too. Do you have burning, shock, electric type sensations, buzzing, spinning of body parts, etc? One thing that keeps me going is that I know when it's really bad, at least it will pass.
Share your symptoms with me if you like.....I'm a veteran Lyme mom.....my eldest daughter also has Lyme, thank God we were aware of it when she bacame paralyzed one night in her apartment. She was a half semester away from her Master's Degree, moved back home and just started Babesia treatment. She's been sick for six years, however does not have brain lesions, memory loss, spinal pain, etc.
Hope you can make sense of this message....Lol, I'm somewhat lucid enough to type although my writing skills are rusty...didn't mean to write so much.....thanks for you reply as well xxoo