Hiya,
Just to add…it’s an Acquired Brain Injury (ABI) not a Traumatic Brain Injury (TBI)
Traumatic Brain injury is caused by a physical accident/force, such as a car crash etc…
My daughter in Hertfordshire, UK, was severely ill December 2015 and spent 3 months in hospital including neuro with diagnosis of ADEM. She had flu jab 6 weeks before she started with Optic Neuritis which then developed rapidly into ADEM. Because it was longer than the 3 weeks before symptoms the doctors would not say it was the cause though. She is still in recovery and now visually impaired at 32 years old and along the way she has met others suffering from other neuro diseases which have indeed been diagnosed as being caused from flu vaccines eg Guerllaine Barre .
That was about the same time frame as mine. My shot was the 24th I went to emergency on January second and it progressed from there.
Yes, as Sunshine Lou (love that name) says, you must get MRI’s done. We are at the moment trying really hard to get another MRI from the Lister, Stevenage, Herts but they are not being very cooperative. It seems these new machines are always in such demand now s am persevering daily now on the phone for my daughter. As my daughter seems now to be partially sighted from the optic neuritis and has other residual problems with bladder, slight cognition I have been giving her, as recommended by herbalist friend, Eskimo3 Brainsharp capsules daily for the Omegas. She doesn’t like talking about it much now but have just pinned her down before shooting off to work (where she has had a lot of support and has been given a big screen and special black on white keyboard) and she admitted that (after I have reminded her several times that optic neuritis does not like the heat) when she does some cardio exercises and gets hot her vision goes blurred, and then returns when she cools off. I have persevered asking her this morning after reading about your heat problems. So it does help to read about others’ problems and talk about things. As you are a farmer Dan, and work outdoors, has anyone mentioned Lymes Disease? I have 3 friends here in UK suffering from severe problems with that and becoming bankrupt as they have to go for private treatment. As daughter had been to Croatia last year and returned with mosquito bites, even though nearly 3 months before the ADEM, I nagged and nagged the doctors in London to look into it for tests and they did send off but it came back negative. However, unless one pays a phenomenal amount of money for even more tests, it might get missed.
She went Croatia Oct 2015, not 2016. Sorry for mistake.
Thanks for taking the time to write. I deal with the ticks all the time on the farm, but I have been tested for Lymes disease numerous times and they even tested me for LIME allergy. 
(Yep they goofed and ordered the wrong test! But I was shocked when it happened as I couldn’t figure out how they knew I had been drinking a LOT of lime juice just prior to the test.) So far all the tests for Lymes disease .
I am glad you mentioned the eye issues. That helps explain what is happening with my vision. When I am tired or overheated my vision does get blurry as well as brown turning into red issue.
I did get a MRI yesterday so we will see what that says. I was quite frustrated that they did not give me any contrasting fluids, but they said they would still be able to see the white matter. Apparently the Doctor left that detail up to the insurance company and they only approved the MRI without the contrasting fluids. :’( Because most of my symptoms are not extremely severe I am worried that the MRI might not show the damage to the sheath like it would had they gave me the IV.
To get the fluid I would have had to pay for it myself and they said that the fee could be as high as 6 to 8 thousand dollars. I did not have the funds to pay for it so I backed off and let them do it without the fluid.
Tell your daughter I really appreciate her input. And thank you for taking the time to answer me.
Daughter never had contrasting fluids with MRI. The lesions showed up clearly enough for the neuro to see and a later one showed the first ones still, even though healed. She had a new one from the time she was still in hospital so we are waiting to see if there are new ones again when we get the MRI apt because neuro said he would probably re-diagnose for MS if more new ones show.
Hi Dan,
I am so sorry for your frustrating experience! I too had an uninformed (first) neurologist. You need to find someone that is either knowledgeable about ADEM and de-myelinating illnesses or someone who is willing to work with you. There are great resources for doctors on TMA.org site.
The biggest thing is to not give up hope. You can get better. The emotions, the exhaustion, the tingling/numbness, etc. all are consistent with ADEM or its related illnesses TM, MS, NMO etc. Call around for a neurologist that can help.
Also I suggest you register at The Transverse Myelitis Association website www.tma.org - they have information, podcasts, reports, research, etc. that may be of help.
I too have emotional waves along with the others. I go to an acupuncturist and that helps with the tingling. I’m on Diazapam for emotions, and I took a bunch of vitamins and supplements that I’ve researched that may help the brain heal (such as vitamin D, Omega-3, Biotin and ALA) but check with your doctor first.
You can get better and yes you could’ve easily gotten it from a flu vaccine. Any vaccine that for whatever reason confuses your immune system can cause this. As for the things showing up in the MRIs now, you’ll find out. They did a spinal tap on me at that initial attack then the MRIs confirmed it. But the symptoms sound right (or wrong).
Good luck and keep us informed!
Laura
Hello Kathy,
I’m in the UK so if your daughter would like someone’s ear to bend then please do tell her to contact me.
She can add me on FB if she likes or just email/call.
Send me a personal message and I can give you my contact details if you’d like.
Hugs!
Lou x
To also add…my ADEM was caused by a tick bite I got from walking in shorts in a sheep field. Within 5 days I was in Intensive Care in a coma!
Biotin apparently helps repair the Myelin. My Neurologist also said D3 is essential!
I take B12 also to help combat fatigue x