Hi - I'm David (ADEM, possibly MS)

[agapetos]

Hi,
my name is David (32) and I'm an add... I mean, I have ADEM, possibly MS. One month ago I was taken to hospital. First symptom one day before the hospital was that I was not able to totally empty the bladder. Next few days were bad. Still I don't remember them. I was not aware what was happening, my wife told me I was just staring into ceiling. She fed me and I threw up everything. I could not move. After the MRI I was diagnosed with ADEM (because of all the lesions), but there were no protein strains that would indicate MS. I was transfered to neurology and there they ran bunch of tests (including spinal tap that was clear - no protein strains) and confirmed the ADEM.
I had double vision first few days that within a week got better and better, untill it healed completely. But I still had two major bugging problems: the indwelling catether and inability to walk. I started doing the physical therapy for walking and now (1 month after) I am walking unaided in same pace as before the sickness. Two times they tried removing the catether, but my ability to empty the bladder did not get better. It was wery frustrating to hope for the day when they will finally take it out, just so that they would say that it is not enough... However, few days ago I was finally able to go from the doctors office without the catheter. Now I am running to toilet every 15 mins. Still... baby steps...
At the moment I am in a sanatorium receving various treatments for rehabilitation. In about a week I am again going to go to the hospital for further research about my condition. I should get MRI, spinal tap and varoius blood tests. They are supposed to tell me then finally what my real diagnosis is. Now I am trying to get in peace even with the MS diagnosis, but honestly it is hard. Still, I need you guys/girls to talk to because I feel this is the place where people struggle with simmilar things as I do. My urologist told me it IS MS, but my neurologist doesn't agree... I'm just torn apart - again (as with the catether) I don't know if I could afford to hope again just to suffer dissapointment.

[Scott1]

Hi David,

While what you have is not MS you have probably found the best place for a conversation as ADEM is rare.

This little note is a good high level summary - https://en.wikipedia.org/wiki/Acute_dis ... lomyelitis

The overwhelming consideration is viral infection. What some of us have noted is some viruses, such as EBV, can prime cells to respond inappropriately when a second infection, such as a bacteria become involved. The consequence of this is usually some sort of inflammation leading to the release of reactive oxygen species and reactive nitrogen species. In turn, these can turn off certain enzymes creating major metabolic disruption.

So for you it's a matter of looking for infections both viral and bacterial. If you have any viruses even if they say they are dormant you should treat them as many still create problems (eg an EBV transformed B cell gives off too much superoxide).
The bacterial infections can be difficult to treat and some are hard to find. If you want to have a crack then use something that attacks gram positive bacteria aggressively. Zinnat is a good example. It's the nuclear weapon for some really nasty bugs (eg Gonorrhea etc) If you do use that aggressive approach then you will need to become a daily user of probiotics as you will kill the good stuff to.
I would also check for NMDA antibodies. The usual treatment for that is a series of infusions of IgG (subject to checking your IgA levels)
I would not be willing to accept an MS diagnosis until you have sorted out the infectious element in its entirety. Lots of conditions mimic MS symptoms and bacterial infections can play havoc with nutritional counts just to confuse matters.
Ask for full blood and fecal testing for the widest range of viral and bacterial tests you can get.
You have a lot of weeding and feeding to do. Make sure you get listened to.

Regards,

[daleski]

Hi David

I was also diagnosed ADEM possible MS. That was nearly 9 years ago, I was rediagnosed with MS 18 months later. Every time I tapered the steroids I had another relapse. My advice would be if you have any symptoms that get worse or are new put some pressure on your doctor to get another MRI. I had about 7 relapses but had to wait 18 months for a second MRI which showed new activity and confirmed MS. Dont let them tell you its just a relapse of the ADEM. Demand another MRI. Relapse equals damage.

All the best

Dale

[agapetos]

Hi,
Daleski, thank you for your advice, I will surelly press on to get as torough examination as possible (including MRI).
Scott1, re. blood tests - I've done about 12 different both for IgG and IgM. I've had positive Influencas A and B (common thing), but most striking were thre tree following:
1. EBV VCA/EA IgG (ELFA) (although IgM is totally negative (0.01)) - it is 4,12 (positive is above 0,21)
2. Adeno IgG and IgM (4,4 and 2,23, both above the positive threshold (1,1))
3. Herpes simplex type 1 IgG (though IgM is negative) - precisely for this one one of my doctors told me that it is quite possible that it caused the ADEM. Whenever I got an episode of manifestation of Herpes type one (like a painful acne on the inside of the nose), it was always located on the nose. He told me that if it is above the mouth line, than it can attack the brain, as (maybe) in my case.
Still, I've been asking around and searching on the internet and have been getting conflicting results - is it possible to get an episode of ADEM from severe psychological/emotional trauma? Some say yes, some no.

[Scott1]

OK,

I'd be tempted to try an antiviral like valacyclovir (because it works for me) and see what happens. The Herpes family can create a few problems.

Have you been tested for mycoplasma, rickettsia or prions? sounds like they haven't tried NMDA antibodies.

Lyme disease coinfections like Bartonella are worth checking for as well.

Blood tests may not find all infections. Some of these beasts excel at disguise and be living in you few years. The bowel is paradise so a fecal test can be more useful than blood.

It might also be worth doing a fasting amino acid study to see if you depleted levels. If you are depleted in any of the nonessential (the ones you make yourself) then they have something to investigate.

Definitely get an NMDA antibody test.

Regards,

[agapetos]

So far I've done the following blood studies (IgG and IgM) and were all negative except for those stated above:
- Lyme
- Toxoplasma Godni
- Citomegalovirus
- EBV VCA/EA
- Coxsackie
- Echo
- Adeno
- Influenca A & B
- Mycoplasma pneumoniac
- Herpes simplex 1 & 2

[Scott1]

Hi,

Get an NMDA antibody test. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4016175/

Regards,