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.
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.
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.
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.
What medications is she taking?
Co codamol , vital d, iron, citalopram, gabapentin, lamotrigine, levetiracetem, rivaroxaban.
Thank you! My doctor is trying to get Medicare to approve Retuximab.
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.
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.
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.
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!!
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).
How r u doing ? How is your daughter now ? My husband is also recovering from ADEM
He is physically OK but serious not able to work and his speech is also badly hampered. He doesnt talk much and when he does there is a lot of stuttering.
I want to know how is your daughter’s speech now ? What all are you doing to improve her speech ?
Thanks a lot dear
Hello, my daughter’s speech is fine now, it took about 2 months to come back fully but I do worry about the other side effects she still carries. I hope your husband gets his speech back fully. Daughter is still improving in small steps over the years. It was Dec 2015. She goes to work but has had to cut her hours due to chronic fatigue and I think she finds it very hard to get involved with multiple tasking ! Sometimes she tries too hard when resting is the answer! But I do think the right nutrition is one of the answers. Hope everything works out for you, it does take a lot of time patience and love!
Thanks a lot Kathy. I hope your daughter gets rid of the lingering issues very soon. My husband is affected since mid May 2018. Its been more than 9 months now but his speech is not improving much. His cognitive abilities are improving but at a very slow pace.
My 7 yr old son got cured from ADEM . He was 5.mnths when he got this disease. And it has impacted his running. When he runs, he drags his left foot. Because his left side was paralysed due to ADEM. With God’s grace, all other things got cured .