By the time My ADEM/Vasculitis was diagnosed my neurologist said it was to late for me to have treatment and the damage was done …he also told me … The brain can relearn how do things and could take up to 7-8 years !!! … Has anyone else had this experience?? … I am 44 years of age … I am in a wheelchair but can very slowly walk with a Zimmer frame … I have had a few falls … But I have physio … Speech therapy and I have occupational therapy including craft and pottery classes … My ADEM was caused from having the flu vaccine in November 2013 … Would love to hear from anyone with similar experience x thanks Ness x x
Hi Ness. My husband started having symptoms in November, 2012. He wasn't diagnosed until Feb. 2013, after MRI's and lumbar puncture, genetic testing and testing for many other diseases. The neurologist put him on prednisone and said he should recover in a year. The neurologist felt it was caused by the flu shot. Well, he is in a wheelchair, can walk with assistance but feels very unstable, he jitters terribly and at this moment is shaking very badly, and hyperventilating a bit, but refuses to go to the hospital. He also has a itching or often sharp pins and needles going across chest and back. Drives him nuts. I recently insisted on a new MRI, and we are waiting for results of that. If I could be assured that this would get better over the next couple of years it would all be easier to take, but he also gets resistant to working at it. I apparently don't know anything. He is 66. I would encourage you to keep working at your physical therapy, eating right, etc. It takes repetition to make the brain relearn.
Hi sweetie pie … Thank you for replying … I can totally understand how your husband feels … I to am very shaky … (I call my legs when shaking either jelly legs or my Elvis legs ha ha) it’s a awful feeling and the loss of control and the fear of falling is not a nice feeling at all … I to get lots of shooting nerve pains … I do take gabapentin for the nerve pain which has helped ease some of the symptoms… It’s not easy I guess for you too … I am very determined to regain the use of my legs and I think that keeps me going … If your hubby ever wants to chat I really don’t mind …I hope the results of his MRI go well … Sending lots of positive hugs to you and your husband x x x
Hi Ness, I also got ADEM from the flu shot. Right after I got the shot, I was in the parking lot and my ear was ringing/hurting along with my throat, and then my tongue swelled up so I went to the emergency room which they kept me over night. I never felt the same after that, the headaches, brain fog, weird sensations, so I kept going back to the doctor until they did the MRI and found the lesions on my brain. I did do the 3 days of IV treatments, but I do believe it had already come and done its damage. they do MRI's on me every 6 months to see if any more damage occurs or if I am healing, but it stays the same. I am so sorry that it has affected you harder. I hope you recover. I am 44, and I got the flu shot at the same time you did.
Hi there. I got it after a severe flu. Two weeks later I went to the doctor who sent me for blood tests, an mri and a lumbar puncture. Adem was diagnosed so I was prescribed 5 iv s of solumendrol. The first episode did not cause much damage, however a second one 6 months later was much more serious. A 2.5 cm (1 inch) long “dot” on my brain (looking like a fried egg sunny side up) made docs wonder whether it was a tumour or an oedema… I went for all sorts of blood tests, pet scan, mri, spinal tab etc and it turned out to be an oedema that was treated with…7 iv s of solumendrol…
Luckily I was back on my feet (sort of) soon afterwards and the optical nerve was not affected. Cognitive problems alongside memory problems appeared…
Getting close to 3 years after the incident my brain is finding ways to by pass the damaged area so my speech was restored and so has my ability to deal with numbers. I am just trying to concentrate on what I am doing and to do one thing at a time and not 2 or 3 as I used to… My temper has become very short but as we have a 3 year old boy who needs affection and love I have to keep calm at all times cause he is in need of stability within the household. I believe he has played a vital role in the process otherwise I would have turned the house upside down…Remembering old things is easy but learning new ones a hard task. I often have to ask someone’s name several times before I can find a way to memorize it, often by connecting it to something I already know. Eg the other day I met a guy called Basil so I could remember his name only after my wife told me “Basil like the one from the tv series Faulty Towers”. So when I saw him again Faulty Towers came up to my mind so there came the name Basil again. Good luck everybody, nice to share my experiences with you and read yours
My son got ADEM after an acute and severe case of the flu. We had no flu shot that year. Doctors told us the brain can relearn things with the help of therapy and it will take 2-10 yrs. We are at year 2 1/2. My son still cannot talk, walk, stand or do anything for himself. We have seen improvements such as now he can open his eyes, swallow, shake his head appropriately yes and no. We still have hope he will recover.
Ness, I am so happy that you started this discussion. I got hit with ADEM in 11/09 and have not fully recovered. I had a ear infection and was put on antibiotics for that. I was 54 at the time. My neurologist was very positive with me. He did not say how long it would take to heal, but when I questioned him about the disability he said I did not have to worry about being off of it. I have not been in a wheelchair,but the PT to get me walking took over a year. I do OK now. Stress and fatigue can get me where I am very wobbly and my voice is not right My family hears it. Hearing that you were told 7-8 years helps me. I have been wondering if anyone else had long term effects. I was beginning to feel I was the only one still having the effects after so long. I know that I am not the same person I used to be. We just have to hang in there and continue to try to improve. I am definitely better than I was 5 years ago.
I got my ADEM when I was 49/50. I got mine from Enbril the medication. I am fortunate that I can still walk. I am 3 years post event. My ADEM was also very damaging. My doctor Nancy Sicotte said the amaount of brain damage was unpresidented for a TNF inhibitor. She wanted to publish a paper on my brain damage but the other doctors at Cedars-Sinai felt that since I only had MRI's after the ADEM and not before they voted against it. I am also lucky that my verbal skills were left untouched. I think the brain does repair around the damaged area's but it take some time. my first battle was with depression as I could not solve easy problems and got lost a lot driving.
Best of luck to you,
Barry C
Hi there. I read your story and I could not believe how similar our experiences seem. I am 36 years old and was diagnosed in April 2014. My symptoms started in February 2014 with balance and fatigue issues. Before I was diagnosed I spent time in 2 Hospitals Who failed to diagnosed me. I have also been told that I received treatment too late and the damage is already done. I also remain in a wheelchair. I have current issues with burning pain in my hands and terrible ataxia issues. I just recently joined the group too. I am hoping we can both find help and support with this group.
I think we are both lucky we finally got the right diagnoses. First they wanted to tell me I had MS.No one in my family has MS and i didn't present any symptoms of MS. Finally I got to see Dr. Sicotte who told me quite definitely I had an ADEM. My IQ took it on the chin as I fell from around 140 to 90 the back up to 96. All from an arthritis medication that you can't sue. It does slowly get better and the brain does re-wire around the damage I am told. Stay well,
Barry C
Hi, I was 48 years old when I got sick after I took the flu vaccine on October 12, 2012 and 2 weeks later I was getting lost on my way to work, I was confused, stiff neck, could not see out of my right eye, muscle spasms and had a falling sensation (the feeling you get when you are riding a rollercoaster) I was hospitalized October 28, 2012 for IV treatment with steroids for ADEM. I had 3 holes the size of pencil erasers in the lining of my brain. I was back in the hospital November 21, 2012 this time with a PIC line because I had white blood cells in my spinal fluid and the holes had not healed. In January 2013 I was diagnosis of MS. I have been treating with injections of Copaxone and other MS treatment medications for 2 years. In April of last year I had to quit my job because I kept falling and the stress of work made it worse. My right side feels numb all the time and my right arm has tremors when I extend it, my right foot feels like I am walking on BB's. My Neuro is now NOT convinced that I have MS and is sending me to an MS specialist to determine if I actually have MS and what level it is or if I have brain damage from the scar tissue from the ADEM. He is leaning towards the ADEM due to the flu vaccine. Did you file the Adverse Reaction Form with the CDC? I have since retained an attorney since the CDC has recognized ADEM as a reaction to the flu vaccine.
Jeanette
Hi Jeanette,
Yes I reported it to the CDC and the company but they didn't do much except seem very concerned and move on. I spent 2 years trying to sue Amgen Wyeth over my reaction to there medication but it was all covered under the black box warning which they made even harder to get around in 06. My ADEM happened the first week of 2012. My guess is the only way you are going to prove you don't have MS is to get the spinal tap that shows the proteins related to MS.I had to get 2 of them because the doctor I was seeing wanted me to have MS. My wife got involved and got me to Dr. Sioctte who runs the MS clinic and ruled out MS completly. Be careful as some doctors love to get you on MS drugs even if you don't have it. That happened to me early on. Feel free to email me with any questions. Barry C
a 63 million dollar award was just paid for a swine flu victim who got brain damage from the vaccine.
Barry C
Thank you all for your responses … And thank you for sharing xxx hugs Ness xx
Jeanette and Barry I am in the UK and I am getting legal advice xx
We are going through Conway, Homer and Chin-Caplan. Lawyers in Boston who specialize in the vaccine related problems. They know how to proceed with trying to collect on the Vaccination Injury Compensation. It is not a law suit, it is a compensation program developed by the government so the pharmaceutical companies don't go out of business from law suits. A certain amount of money in taken out of the fee for every vaccination and put into this fund. We are now at the point of the documents being submitted to the court( a special one set up just for this in Washington, DC), but we wont' know anything until June. It is quite a process, but worth pursuing. Just keep good documentation on who you went to see and what tests have been run.
I had the flu jab oct 2012 and two weeks later woke up with a drunk like feeling and foggy eye. I thought I was just tired and went to work and collapsed. They thought I had a stroke as my right side was weak, however after tests including mri, lumbar, bloods, eye tests they thought it was adem or ms. I had steroids and was sent home on all sorts of meds. I was admitted another five times in three months each time having steroids. I have the lesions on my left side of brain and now live with a poor memory, tingling and when Iget really sharp pains over the lesion area my right eye goes foggy. I am not on meds at the moment and each day is a struggle and I find easdy tasks hard unlike before all this started. My neurologist said it should go after three months but I still have it.......recently my memory has got worse at times as has the tingling. My neurologist was very dismissive so I try and cope now on my own.
Hi, I was also diagnosed with ADEM in 2012 after taking the flu shot. I have been treated for the past 2 1/2 years with daily/weekly injections and tons of trial medications for the poor memory, tingling sensation, falling, dizziness. I was seen by an MS Specialist today who showed me my MRI and said I do not have MS, but she did point out that I did have a white lesion and several scar tissue areas on my brain and then she pretty much told me that ADEM did not exist in adults and that I needed to see a psychiatrist....Really??? Just wait till I see my Neurologist who diagnosed me with ADEM and treated me for it for 3 months (I was in the hospital 2 x in 3 months) before changing my diagnosis to MS next week, we will be having a come to Jesus meeting for sure!
Jeanette
vix said:
I had the flu jab oct 2012 and two weeks later woke up with a drunk like feeling and foggy eye. I thought I was just tired and went to work and collapsed. They thought I had a stroke as my right side was weak, however after tests including mri, lumbar, bloods, eye tests they thought it was adem or ms. I had steroids and was sent home on all sorts of meds. I was admitted another five times in three months each time having steroids. I have the lesions on my left side of brain and now live with a poor memory, tingling and when Iget really sharp pains over the lesion area my right eye goes foggy. I am not on meds at the moment and each day is a struggle and I find easdy tasks hard unlike before all this started. My neurologist said it should go after three months but I still have it.......recently my memory has got worse at times as has the tingling. My neurologist was very dismissive so I try and cope now on my own.
Jeanette,
My brain now has lesions after the ADEM. MS is the fall back postion that most doctors tell ADEM suffers at first. You are lucky you got an ADEM diagnosis. Yes ADEM does happen to adults. I was 50 when I got mine.
Barry C
We are finding that most doctors don't even know what it is. No one really seems to know what to do with it after their "hopeful" estimate of recovery in a year statement. My husbands neurologist couldn't understand why he had "itching" or tingling across his chest and back, and he said that my husbands hesitant walking and weakness was "voluntary", or affected, as in faking it. My husband was 64 when he was diagnosed with ADEM.