I was diagnised with ADEM about 6 weeks ago and was put on a 1 month course of corticosteroids which seemed to work well and help me get back on track. I finished the medication 10 days ago and since then alot of my old symptons have returned(numbness, poor co-ordination, Taste, weekness and vision). I have a Spinal MRI arranged for the 12th of November which they are going to use to check the lesions are from the same time as those on the brain MRI.
Perhaps I am being paranoid but I feel like I am having a relapse but my Nuero says that it is probably just my brain settling down again and this is quite common.
I was doing really well on the steroids so why not put me on another course of those.
Is it common to go backwards again before I see some improvement.
First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Acute Disseminated Encephalomyelitis (ADEM) is an inflammatory disease that affects the brain, specifically the myelin sheaths that surround the nerve axons. With loss of myelin "insulation" signals are slow and get crossed, causing loss of function (motor, sensory, vision etc), seizures, headaches and/or loss of cognitive function. Steroids help by reducing the immune attack on myelin and reducing the inflammation of the already attacked myelin. The actual cause of ADEM is usually not known, but is thought to be precipitated by a response of your immune system (to a virus, bacteria, etc) that happens to attack myelin as well (called molecular mimicry). Since we often do not know what is causing the ADEM, we are never sure when to taper the steroids. Most cases of ADEM are "mono-phasic" or only involve one attack. Rarely, ADEM can recurr or what was thought to be ADEM may turn out to be multiple sclerosis. Steroids also have negative effects as well including weight gain, thinning of the skin and weakening the immune system. That being said, Many patients suffereing from ADEM require an extensive steroid taper, due to recurrent symptoms. I would suggest that you get a repeat MRI of the brain and C-spine with GAD contrast to make sure you do not have any new lesions (New lesions might suggest multiple sclerosis or a repeat attack of ADEM). If no new lesions, then finding the lowest dose of steroids that takes away your symptoms should be achieved and then you can restart the tapering process. Some of the damage to the myelin can be irreversible and cause chronic problems of numbness, pain, etc. For this I would recommend starting a medication for neuropathic pain such as elavil, neurontin, topamax etc.
I hope this has been helpful.
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