Hi all. It's been awhile since I last posted. My husband has been getting worse instead of better. We talked to the neurologist and he recommended we get another opinion which lead us to Stanford. The neurologist there has decided to call it Atypical ADEM since he continues to face issues w/ it. He felt it was not MS, or if it is then it is atypical too. He placed him back on prednisone 60 mg for 6 weeks. That is kind of scary, but we have to do something. We go back on Aug. 22. He seems to be a bit more interested in things around him since starting on it and is talking more. I don't know if it is the medication or maybe just doing something. He has become so thin, he has trouble talking, he has some kind of neuropathy that is driving him nuts, and various other issues. Has anyone had this experience? I know all of you have had residual issues that are either slowly improving or are just the way it is, but have any of you actually backslid in your symptoms?
Hello, Sweetiepie. I had recurrent ADEM - two events, one in 2009 and the last one one year ago, in summer 2013, but in both cases it was fast, violent, lasted less than two months and took about one year to recover.
the evolution of my situation is strongly different from your husband's one. The only thing that comes up to my mind -but, let it be clear, i am not a doctor - is perhaps the dose of prednisone. I took metilprednisolone intravenous infusions of 1000 mg - seven of them, last year - and 100mg of prednisone for about two months, this last time, the first time i went on with 50 mg max.
The only thing that i can tell is that the treatment i got seems more aggressive in terms of doses. On the other hand, I think that a neurolgist at Stanford knows well what he does.
Perhaps, you could ask if a higher dose of prednisone can help. For me, it worked, but it's something that must checked by a professional doctor.
I am sorry that i cannot give more help. my apologies. And my best wishes.
Thank you. Just knowing that some of you have recurrent issues, sets things a little straighter in my mind. Doctors seem to think that it should just clear up and go away and then are baffled when it doesn't. I honestly think the first neurologist thought it would just all go away after a year. Surprise! it didn't.
gI was diagniosed a year ago my neurologist belives im experinceing a recurrent flair up of ADEM was goiengto to put me on prednisone but decided not to to because im a diabetic and predneson makes my blood sugars shoot to the 400 timberwolf51 he wants to see me first I have apt on September 10th
Timberwolf51 said:
gI was diagniosed a year ago my neurologist belives im experinceing a recurrent flair up of ADEM was goiengto to put me on prednisone but decided not to to because im a diabetic and predneson makes my blood sugars shoot to the 40
Hi Timberwolf- ADEM is getting stranger and stranger. Just when I thought I sort of understood what the process is I hear of all these recurrences. The prednisone still seems to be making my husband more alert and energetic, but I'm afraid of what happens when he is off it. There is another treatment the neurologist will consider, which is the IVIG. Have you tried that? The sugar thing is really concerning. My husband wants the sugar like mad. I just talked to him about it and voiced a theory, because his "itching" across his chest and back is getting to him more. I suggested that the prednisone is meant to reduce inflammation, but he keeps dumping sugar into his system which increases insulin, which the body goes out of whack and produces inflammation. If the nerves are being attacked by more inflammation, then he is going to have more of the neuropathy. I don't think he gets it, so I will just have to try to control him. Timberwolf, I hope you have some good news on September 10th. I will keep you in my thoughts.