Acute Disseminated Encephalomyelitis (ADEM) Support Group

New person needing info


#1

Can someone who has dealt with lack of ambulation, please talk to Tony (Aodanxa)? Thanks for your assistance. Lynn

Aodanxa

hi my name is tony, I’m 23 yrs old . i was hit with adem February 2017, it has been a year since, yet i haven’t had much recovery after the 6 months period. i can move up to my fingers but thats where the nerve damage starts to show. my fingers/hands are very weak and i have lost mobility from the abdomen down. i cannot walk ATM. Has anyone else lost the ability to walk, i haven’t read much on here about anyone not being able to walk. i feel as tho i may not have ADEM

strong text


#2

Hi Tony! My sons ADEM started in February 2017 as well. He cannot walk independently and struggles even with assistance. Are you able to bare weight at all? Please feel free to PM me if you prefer!


#3

Tony,
I was diagnosed in 2010. My legs kept getting weaker and no one I saw (physicians, neurologists) knew what was causing it either. I too went from not walking back in 2011, to currently I’ll be waking this year. Through a diet change. PM me if you want to know more. Mine was (is) viral which is one item they call a possible cause when diagnosing A.D.E.M.


#4

Hey sorry no I have no control over waist below not even a slight movement. Lately something new I’ve been feeling is my ass starts to feel numb , and I feel to releive pressure but i think it’s more below the epidermis. I cannot feel contact on my epidermis on my ass. Very strange.all of u and least explain having some slight movement or can just weigh bare


#5

Hi can anyone help me please :disappointed_relieved:


#6

Tony,
Do you have a Dr. who you see for ADEM? What do they say about your new symptoms? Any new testing done? Lynn


#7

Hi Tony,
I first was weak on my left leg and arm and eventually could not walk at all but i was already admitted to the hospital and was high on steroid treatments. Eventually i was able to walk again in about 3weeks as before. I was so lucky that my husband took me to the best hospital in nyc. adem did not have a chance to take my mobility away as it was diagnosed on early stage and treated right away - high dose steroids, then plasmapheresis and then ivig - all while i was orally taking steroids. I was cured although my mri shows awful scarring. I wish you had a chance to find a great doctor and treatment. If you need more info, pm me.


#8

My 4 untold was diagnosed wit adem of January 2018 n while in the hospital trying to figure out wat was wrong with her she stopped walking couldn’t lift her arms n couldn’t sit up wit out being held up n had little function in her hands she’s had almost a full recovery since being put on steroids and lots of physical therapy but keeps having flare ups n is now going blind bc of the flare ups, scariest bing for us I pray for u to regain ur strength!!!


#9

Hi Sonie,
My husband is also diagnosed with Adem in May 2018. He has lost his ability to walk , speak read or write. He has shown little improvement in past 45 days.
I am happy to read that you can walk now through some diet changes. What are the diet changes that you will suggest for my husband.

Thanks
Nidhi


#10

I am sorry you husband go hit with ADEM so hard. After he was diagnosed, did his Doctor say what caused this. The Dr. I am seeing now, tested and told me my was Viral. He suggested a diet change. First I cut out Dairy, Sugar (such as cane) and Bread made with these items. At first I thought it would be difficult to do this, but it wasn’t. There are many companies offering different options. Some Doctors are aware that viruses eat certain foods that we eat. Some are not. Epstein Barr I am learning, is a Virus causing many problems. Eating certain foods a virus likes is what keeps a Virus in us alive. Fruits. All fruits. Vegetables. All vegetables. I was eating meat, but I quit eating it three months ago. Left more room for the better things. One Doctor put me on Solumedrol initially, but it weakened my immune system that was fighting this virus. I don’t take that anymore. Has your husband improve at all or is he still about the same?

Sonie


#11

Hey Tony

We haven’t heard from you for a while. What’s up down in Toronto? How are you getting along, and what are your doctors saying now?

We get concerned about people when we don’t hear from them!

Seenie from ModSupport