Laura asked about my treatments. Intravenous immunoglobulin, or IVIG. "G" antibodies are collected from donated blood and administered to the patient (me!) These antibodies are purported to cling to the antibodies of my own in order to stop the demyeliniation. Healing can then begin. I've had 9 so far....5 in 5 days while hospitalized, one a week for 4 weeks at home, now one every 3 weeks at home. My first "3 weeker" is August 25 and 26. I'll be getting 110 grams, which is too much to do in one day.
I'm trying to work every day, it's hard, folks! Head gets to busting, no energy. And I'm a school principal! Headmaster, Athletic Director, Teacher....I have great help at work and an understanding board of directors, so that helps very much.
I have seen a little improvement since starting IVIG, but still haven't strung 2 headache-free days together since February. I started treatments on June 30. About every other day I get a "8" on the scale (you all know THAT scale!)
Heard of this method but my neuros were not very impressed about it. I see three different teams in 3 different countries so I have three different opinions though they always seem to agree. I had a very heavy attack after which I was administered 7 iv s of solumendrol alongside keppra tablets for three epileptic seizures I had suffered in the meantime.
Right now I am on a preventive treatment with immunosuppressants for 9 months (tysabri). Next mri (7th in two years) scheduled exactly one year after going on Keppra and tysabri. Its outcome will then dictate the future course of the treatments. Each team has its own magnetic tomograph, a Siemens, a Philips and a GE. My favorite is the open Siemens. Some day I should write a book with the title "how to survive the magnetic tomograph tunnel"
I have dizziness in the morning hours, occasional but not regular headaches and numb feet and hands. Morning wake up is a killer but I get over it once the "machine" warms up. I try to do some walking (2-3 kms/day), swimming and some exercise. The summer heat is also not helping so I try to stay indoors as much as possible.
Interesting comment about the hands and feet, George. My husband complains his hands feel strange, almost swollen but not swollen, or stiff. He has a hard time describing all the things he feels. He feels dizzy all the time. I get frustrated that the doctors seem to treat him at the beginning, but now that it is getting close to being almost 2 years out, they look at him baffled about the symptoms he continues to have. Sometimes I feel like they just want us to go away and not plague them with more answers.
January 2015 will be two years since everything started. Numb hands first, followed by numb feet and dizziness a headache every now and then
Docs say that dizziness will eventually go away. I dont know.... Maybe once I get off Keppra which I take for the epileptic seizures. Docs have a hard work in the sense that each and every case is unique hence there is no diagnosis for each case, so their answers are based on incidents they experienced that look similar to the specific case. Once I pushed a neurologist too hard for an answer to my problems she pointed at a young man on a wheel chair and taking advantage of the friendship that we developed in the meantime she simply asked me to get lost. You need time, patience and understanding
George. I understand the uniqueness of each person, but it is frustrating when a neurologist looks at my husband and says he doesn't see how the neuropathic sensations he is experiencing could be related to the ADEM. Duh. Or chides him about his walking and says he thinks it is voluntary that he is walking w/ no balance or stiff legs. It is like he understood enough of the condition to figure out a diagnosis and it ended there. The doctor he is seeing in Stanford did not question the symptoms he is experiencing. He seemed to understand and take it as a norm. I don't believe that just because there is someone sitting there as a parapalegic, that that person is more important in what he has to deal w/ than what another patient has to deal with. It is all important to each individual. I probably could have that opinion if my husband wasn't seeming to be getting worse and was at least stable. It helps to see what each of you is dealing w/ and experiencing because it at least confirms that he is not "faking" it. My biggest problem w/ the doctors so far is they don't seem to listen to concerns. I had a concern about acid reflux in my husband that I think he has had for a long time, but seems to have gotten worse w/ the ADEM. I took him to the general doctor in January for a whole body check up and had that on my list of concerns. I wanted everything checked out since his head had been such a focus. The doctor spent the whole time asking him questions off a Medicare form, even though he has seen my husband for many years, and tossed my list of concerns on the counter and never got to them before he ended the appointment. Just last week my husband had an acid attack right after dinner and actually aspirated some of the acid and then came down w/ aspiration pneumonia. Now everyone is concerned about his acid reflux and his ability to swallow even though I have been bringing it up for almost 2 years now. I realize I am venting and I am sorry for that. I just need some confirmation that all of you are experiencing similar lasting symptoms as it helps when I am discussing things w/ the doctors.