I was diagnosed with EM, January of this year. I am a 52 yo mother of 2, who has always been active and involved with my children {12 and 16} My symptoms started about a year ago. It was mostly numbness in the right foot at FIRST. Cold to touch. Numb enough so that is disrupted my gait and I fell down the stairs. The symptoms began to spread..and it started looking like MS. I know that is a common path that many of us have been down. Pins and needles in fingers, then hands, numbness and tingling in feet etc. I've always had Raynouds so at first it was thought to be an exacerbation of the Raynouds. But then the crazy color changes started, searing heat . The searing pain is kind of like being attacked by red ants. Like a chemical burn, but my cold hands now sometimes run hot. I can have my right side cold or hot and left side cold or hot. Seems like every extremity will be a different temperature and display slightly different symptoms and colors..from a blanche white, to bright red, to a purplish blue..etc.
MS and essentially every autoimmune disorder that can be tested for has been ruled out.
As many in the group, I self diagnosed and was confirmed by a local dermatologist who had done a fellowship at Mayo. She had seen 4 cases and that was 15years ago. She felt mine was very unusual because of all the triggers I have and the Extremely rapid vascular changes I have with positioning. You can almost hear the blood rush into or out of my hands. I can sure feel the..swish of fluid. I know ..sounds strange.
Anyway, my pain, swelling, redness has always been worse on my right side. My right hand and arm being the worst, followed by right foot, left foot, left hand. I also experience it going up my right arm, across my face and ears and sometimes going up to my knees. AGAIN, always worse on the right side, with the exception of my ears. where it is the left side.
My MRI of brain and spine, showed several herniations, bone spurs, stenosis {worse in cervical area..with most of the narrowing severity being on the right!}. I was also told by the neurologist and radiologist that I also had a syrinx. It also showed some white matter in the brain, but at this point not MS. Both the neurologist and the rheumatologist thought that the syrinx and or stenosis might be an underlying cause of the EM. I was sent to a neurosurgeon. I had spoken to her personal assistant before hand via phone and forwarded her some links in regards to EM. She was very dismisive and said that I did not have a syrinx but that the stenosis in my cervical area was severe enough to require surgery. When I asked her if there was any possibility about the EM being related {secondary} to the stenosis....she said Absolutely not. I was a bit shocked as I realize she had never even heard of the disorder until she saw my information. So don't expect neurosurgery to fix your EM. I told her I had read that spinal disorders can cause EM. She again was dismissive and stated "IT was no big deal, after all I have Raynouds and I manage." I responded, that I was diagnosed with Raynouds at 10 and had little difficulty in handling the disorder, but that the EM could bring me to tears and was excruciating. TO ME..it was like saying " Oh big deal you have Melanoma, well I have basal cell carcinoma and I handle it fine"
She told me to come back when the arm pain got worse. WHICH, of course it has and I realize that if I was not on neuron tin {as ordered by very empathetic hematologist}, I would not be able to function.
Bottom line. Has anyone ever heard of EM resulting from spinal cord problems? I certainly see how it could tie in..and I have found it mentioned..but never elaborated on.
Unfortunately, the practice the neurosurgeon is in, is the only one that accepts my insurance within a 2 hour drive. The policy is..if the doctor saw you once..you have established a relationship..and they will not allow you to switch physicians. SO, I will be seeing the same doctor again in 2 weeks. I am sure my issue has been discussed with her. I just feel like I will be going in like a puppy with it’s tail between it’s legs. I
am such a bad dog, to question the doctor. I fully understand the any type of invasive surgery may have no effect on my EM whatsoever, but I find it difficult to grasp that the issue of EM being related to a spinal cord issue is so easily dismissed.
I read often and am very thankful I found this site. The pain gets really bad when I type ..all over..but ALWAYS starting in my right arm, and hand so I don't comment very much. I have pushed myself to type this post in an effort to gain insight and your opinions.
If you enter Erythromelalgia in you tube, you can see some of the videos that I have sent to various doctors.. under the name Cindystyle60.
THANK YOU SO MUCH!
Cindy