My Best friend and brother was diagnosed last year October 2013 with MS - 1xMRI later, a few lesions on his brain and with and his symptoms (headaches blurred vision partial facial paralysis) BOOM this hyperactive amazing man was told its Multiple Sclerosis. With no time to absorb it all he was quickly treated for 5days With the IV cortisone. He blew up to double the size but this didn’t seem to work but still his vision is deteriorating as well as his mobility. A month later he relocates to another city and we set up an appointment with a new neurologist where he will now be based. He is diagnosed with ADEM but the Lumbar Puncture will confirm this. Very expensive Full cover med aid gets him … On a a waiting list for a bed in a private hospital . Well 2 weeks later and several calls to find out if. Bd became avail the wait is over and it’s ADEM!!! ADEM ? Everyone is confused. We do not live in the same city but I know his health is rapidly deteriorating. Especially mobility and eye sight. And since the IV treatment he has changed his work schedule and diet but refuses to be treated NOR does he take meds. He is currently seeing a acupuncturist 3 times a week ! Shouldn’t he be on treatment schedule? Should he go back to a neurologist? Or which specialist.
As per my profile name I’m newly diagnosed with lupus and I’m on a treatment plan as well as gluten free vegan diet.
I would honestly appreciate any advise/guidance on how to deal with my brother.
He needs to go back to a neurologist. They should take another MRI with and without contrasting. The lesions should heal. It is my understanding that with MS there will be old healed lesions and new lesions. With ADEM it was explained to us that there will be a rapid decline in health and then it should slowly improve. My husband was on Prednisone tablets for about 2 1/2 months; every 2 weeks the dosage would be decreased until he was no longer taking it. Other people had the IV treatment. My husband's eyesight slowly improved over the course of a year, but he still doesn't feel like he sees great, and most of that is the brain damage from the lesions. He really needs to make sure of whether it is ADEM or MS. If you read through some of the discussions you will see that some people had numerous MRI's before they were eventually diagnosed w/ MS.
Hi there. This is reminiscent of a never ending story....
I had my first symptoms on January 2013, numb hands basically. Immediately in for an MRI and a lumbar puncture the day after, + five drips of solumendrol. Neuro was very quick to diagnose MS though ADEM was also suspected. Two months later I was admitted to a university hospital, where docs following a second puncture and a second MRI diagnosed bifocal ADEM. Things in the meantime started to deteriorate, feet became also numb, dizziness not experienced before, another 5 ivs of solumendrol followed by a period of tapering off.... Third MRI was clean but symptoms persisted.... A fourth MRI in July revealed a relapse, so another 5 drips of solumendrol and this time an MS diagnosis with a prescription of interferon, Rebiff that caused a series of epiletptic seisures. a fifth MRI in October showed no improvement, rather a deterioration, so another 7 (please) drips of solumendrol, off the interferon and put on Tysabri.... My advise while on cortisone and in order not to blow like a balloon is no sugar and no salt AT ALL. I avoided the side affects by doing so.
Right now I am still on Tysabri with numb ends, dizziness, tiredness but although diagnosed with MS still in doubts as to whether this is my real problem..... I shall continue the treatments while taking pills for epilepsy at the same time and of course taking care of my diet (read OMS it helps) waiting if ever for the next relapse to draw final conclusions.
My belief is that as all those autoimmune diseases are as unique and personal as finger print, I can not follow any rules but rather wait for the development of my case.....