Acute Disseminated Encephalomyelitis (ADEM) Support Group

ADEM & Spaticity


#1

Does anyone with ADEM have Spaticity, balance, speech, and difficulty walking? Diagnosed with ADEM and Stiff Persons Syndrome in 2015 after previously diagnosed with Lyme disease in 2012.


#2

I’ve had all those symptoms since getting ADEM in 2014.

They’ve improved since the initial attack but I still do have some (minor but noticeable) deficits.


#3

Hi Princess, currently I get a week of IVIg infusions monthly and am taking Cellcept. My doctor has been trying to get Medicare to approve infusions of Retuximab also. What medications did you take? I’m thinking I’m one of the unfortunate people that won’t improve. Thank you for responding.


#4

Hello. My sister has difficulty speaking, her speech is very slurred but it also affected her swallowing. She has spasticity in her left wrist. She has very poor vision and is now tetraplegic. Her attack was in September 2016. She is making very slow progress though.


#5

What medications is she taking?


#6

Co codamol , vital d, iron, citalopram, gabapentin, lamotrigine, levetiracetem, rivaroxaban.


#7

Thank you! My doctor is trying to get Medicare to approve Retuximab.


#8

My daughter had all these after starting with Optic Neuritis. Went downhill very fast after being diagnosed with initial MS but because the symptoms did appear so fast and got worse and worse the doctors finally diagnosed ADEM after many, many meetings. Consultant still not 100% sure though and expected to find new lesions but none so far since early 2016. Intense physio and speech therapy helped her get back on her feet and lose the spaticity to a minimum. She was in the Neuro ward at the Royal Free Hosp, London for a month where there was a brilliant physio team but she then had to give up her bed and got transferred back to Lister, Stevenage. She finally got to a recovery centre in Watford who continued with her physio which she had for a few months. She is now walking normally but does have a few cramps sometimes when she finds quality magnesium helps. I have heard of three other distant friends who got diagnosed with ME years ago and then going private and got diagnosed with Lymes but they all have similar symptoms to ADEM so there is a huge umbrella of these illnesses with such similar symptoms and one has to wonder whether in fact they have been misdiagnosed further along the way. Very difficult for clarity with these neuro illnesses.


#9

I’m looking for a clinic that does intensive physio therapy. I to find that magnesium helps with cramps and spasms. Thank you for responding.


#10

Hi @Princess
Can you please elaborate on the treatment and workouts you did during these years of improvement? Also would be nice to know how long did it take you to get to a “almost not noticeable symptoms” status.
I had my initial attack at 2014 also and suffered from all mentioned symptoms (except speech), but still have difficulty walking and suffer from balance issues and stiffness.
Many thanks!


#11

I was prescribed gabapentin and klonopin (as needed).
I still take the gabapentin but rarely take the klonopin (mostly because I don’t want to get addicted).

Wishing you a speedy recovery!! :heartbeat:


#12

I didn’t really do any specific treatments or workouts.
I still have issues with stiffness, slight weakness on my L side, balance (I still fall sometimes but its rare).

When I go to the gym/workout I focus more on strengthening on my left side (my weak side from hemiparesis).