Recovery Time & Supplements

General
1

Hi Everyone - Glad I found y'all.

My name is David, 27 yr old male, Austin, TX.

2 questions;

1 - How long has everyone seen their recovery been to get to 90% - 100%. I've read average is 1 to 6 months. That is a wide average and I am nervous as I am just hitting the 6 month mark and probably at around 70%.

2 - Any suggestions on supplements that really kick butt? I am on Omega 3 6 9, Vitamin D & E, and some amino acids. Any other ideas of something that really helped recovery?

My Story:

I started to get a vertigo sensation around mid June of 2013. I eventually went to the Dr and the ran blood tests, everything fine. Over the next few weeks I developed numb arm, and a hard time speaking and swallowing. I went to 2 ENTs and eventually a neurologist that did a MRI and found a lesion. I was referred to a neuro surgeon as they believed it was either a tumor or tapeworm. They ran additional tests including spinal tap and all were - okay. Finally, on July 5th as problems continued to develop i agreed to let the surgeon go in.

The suregon found normal tissue, and I awoke in the ICU where I would stay for the next 40 days. They continued to run additional tests including another spinal tap (bone, skin and lung biopsies and a lot of viral type blood work) everything was fine. At this point I had been tracked, got a peg tube and could only communicate via writing or texting. My vision was double and I used font 50 on the computer. I was put on a "shotgun approach" from the Drs which included an anti viral, antibiodic, anti fungal and steroids all at the same time to try to improve. This did little, and eventually they did plasmapheresis which stabilized me.

After this I requested to leave the hospital (i was so tired of it) and go to therapy. I was moved without them knowing what I had, but i figured I could fight through it. While at therapy the new doctors finally brought up ADEM. I then did a few rounds of IVIG. After about of month of inpatient I was moved to out patient as I could walk for 10 minutes or so. Still could barely speak, and could not eat.

I eventually moved back to Indiana into my parents house so they could help care for me. And in September did heavy steroid treatment of 1G for 5 days.

It wasnt until late october I was able to eat some what again, and people can finally understand me. I am walking a little better every month, but still have tightness or heavyness on my right side. Vision is getting better, but aways to go.

I've read a few other posts and I feel blessed compared to the condition of some of my peers. I pray we all recover quickly. I guess I just feel like I am improving very slowly and am anxious to get out of my parents house. Any additional thoughts and answers to my 2 questions will surely help.

Thanks,

David

2

Hi David
Sorry to hear you are also suffering from Adem. Our son is still in recovery also, it will be a year on 7th January since he fell very ill. We too are still a long way of 100%. He will be 3 in January and was paralysed from the neck down just before his 2nd birthday. He was quickly diagnosed & was on steroids for over a month, he had brain swelling & lesions. It’s taken all year & lots of physio but he is moving arms, fingers etc not quite where they were but he can play & eat etc. he is also learnt to crawl again & sit unaided. He is still unable to stand therefore is still in a wheelchair.
He is on gabapenton & baclufen… And goes into theatre regularly for Botox injections which loosens his muscle tone!!

We are still struggling coming to terms with this sudden disability & too pray for a full recovery!!!

I think time & physio will be the key to recovery.

Good Luck, keep us updated & thanks for sharing your story.

The Haddow Family

3

David,

I got ADEM in April 2013, but I was lucky, because I was diagnosed my a radiologist who had seen one other case of ADEM when he was in Med School, YEARS ago. I still have symptoms in my hands, but I am 100% better than I was in April. My husband is a physician and nutritionist. I swear I have made progress because of his care and vitamins. I'd be happy to help anyway I might. Keep thinking this way...How much better are you today than yesterday or 2 weeks ago.

Robin

4

Hello. I waa diagnosed in August. Even though this all started in Febuary 2013. No doctors knew what was wrong with me. Even though they saw lesions just on the left side of my brain. I was eventually sent to my doctor now who diagnosed me. I have only had seizures because of adem. But one of them was really bad where i couldnt talk and my whole right side was useless. Ever since then i have been great. I am still on steroids though. Which probably isnt good.

5

You need to try and make improve your general health. Example...nutrition, vitamins, etc. I think that has made a real difference for me.

Lynn

6

Hi there David!
Well, it sounds like the ADEM hit you pretty hard. It can be very frustrating, waiting to feel normal again. I was diagnosed in Nov, 2010. After 1 year, my neurologist told me that I was not going to get any better than I was at that point. Like you, I am very much improved from that November. It took a long time to accept that I will never be the same person that I was. I do not mean to bring you down and I do hope that you continue to improve. Most of the time I am ok but have moments that last anywhere from a few minutes, to hours or days. Tiredness and stress have a big effect on me. We just have to learn our limits.
Today, I saw my oncologist for Multiple Myeloma. He said he is more concerned with my brain than the cancer at this point. The ADEM does give me more problems on a regular basis. They will continue to treat me early in hopes of keeping my brain from being attacked again.
Continue to walk and remind yourself often that you are much better than you were!
Take care and hang in there.
Karla

7

Hi David

My son was diagnosed in July 2012, he had a lot of mood swings, temper issues and struggles with learning, I would say he did not reach 95% until later this year! over a year post diagnosis! he is still on anti seizure meds. On a side note my husband had a head injury 9 years ago and our sons post diagnosis affects were very similar to my husbands post injury affects. My husband made big improvements for 2 years and more smaller improvements for another year after that. Brains heal slowly and that can be frustrating to get your head around, give it time as there is still plenty of opportunity for healing and improvement.

8

HI David ,

I was diagnosed with ADEM about 7 years ago. I got mine from a sinus infection . They took many test. My symptoms came on overnight. They thought I had a stroke. But after a catscan with normal results I was released from the hospital with followup . I was getting so bad i could not feed myself . Could barely walk and I had uncontrollable shivers.When my husband brought me back to the ER an MRI showed 7 lesions on my brain. I was rushed two hours to Boston General.They took more tests, spinal tap,blood work for everything under the sun. They put me on steroids I V and did a brain biopsy .

they thought maybe lupus and MD but nothing. The neuro opthamolgist is the one that suggested ADEM.

I had no use of my left arm so about 3 months. and I went to Inpatient therapy for a month attached to a pic line to have IVIG done 3 times a day.

As of today a still have some issues but I have use of my arm and legs again. I would say I am about 95% back.

Don't give up You have a great chance of recovering fully.

Leann

9


Hi Leann,

So its been 7 years and you are now at 95%. What % were you at the 1 year mark?

David

10

I was probably about 85%

11

thanks! Happy New Year

12

HAPPY NEW YEAR TO U TOO.

13

Hi, I'm at the one year and 22 days mark now. Have a bit of sunburn't back effect now and then and stinging back from nerve damage. My twitching seems to be less frequent, hardly noticeable in last few days. cramp has stooped, I had a few tremors and spasms in feet seem to be holding off too recently. My tingling in my left hand is peripheral nerve damage so not sure how that happened as ADEM is central nervous system. I'm about 85% recovered. I did feel up to 90% in September last year on a few days. I get bowel issues sometimes and bladder issues if I don't go soon after the urge. i need to sort out my diet and fluid intake, am seeing dietitian soon. The other thing I started doing was meditation about 4 months from start of illness . I had hyper anxiety with my illness and this helped me a lot. Lots of sleep, not to over do it or push yourself to early. I have Vit D, calcium, B12 sometimes.