My first post, a bit about me, and a question :-)

General
1

Hello to the group,

I’ve only just found this place, and I’m looking for a bit of advice. But first, a bit about me..

I took early retirement in 2009 at the age of 49. In 2012 I suffered my bout of ADEM. I had felt ill for a day or so, a bit like flu, or just a bad cold, but I noticed that when I got home one evening my key missed the key hole on the front door. And then I noticed other little things like I missed the door handle inside the house. I was worried, but went to bed, the following morning I woke with a banging headache. My wife then decided to take me to A&E at the local hospital.

My symptoms presented just like a stroke.

24 hours later and I had been diagnosed correctly and I was treated IV steroids. A week later and I was discharged from hospital

I found that was left with a weak left leg (I could still walk, but my balance was off a little) I also had a weak left hand, and poor fine control (using a fork was hard) and carry a cup of tea would end up with spilt tea.

Having checked some of the posts on here I see that there are people a lot worse off than me..

I’m now 3+ years down the road, and there’s no change in either my left hand or leg, my wife says I’m just clumsy and can live with that.

But here’s the thing..

Ever since then I have found that I have to constantly and regularly caugh to clear my throat. I’ve being seeing my local G.P. and (via him) an Ear, Nose, Throat specialist. That, so far, has come to nothing.

And thus my web search has found this forum :-)

I have also experienced an ‘issue’ with swallowing, the reflex sometime stops and I really have to think about the action for me to actually swallow. This doesn’t always happen, just now and then.

So, my question is this: could this cough thing be linked to my ADEM???

2

Andy730 -

Thanks for sharing your story and your post. Don't give up on your coordination, those are skills you can regain. My son went back to occupational therapy for a refresher about a year or so post ADEM, and it helped. The cough and swallowing is new to me but hopefully someone here can comment. Glad you found us.

Best,

Ken

3

I understand completely how you feel! I also was very weak and had no coordination when I got home. My hands still shake I also developed a slight stigmatsim and glaucoma I’m 30 that’s to young to have that when I get headache it’s only on the right side I’m worried I’m gonna have a relapse especially when I getting headachs more frequently maybe have your eyesight checked it might help with your coordination it helped me alot

4

Andy730, My name is Lynn and our symptoms are very similar. I was diagnosed in 2013 and I had issues with balance though I could walk. I lost use of my hands and had to learn to use them again. I kinda giggled over the tea cup...very familiar. You made me think about the swallowing and coughing...I have the same issues. My husband is a chiropractor and feels the coughing and swallowing is because of the herniated discs in my neck. But now I wonder about the ADEM. Do you have any issues with your cervical discs? Lynn

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Lynn & others,

Thank for all your comments.

I don't have any cervical issues at all... I just happened to see my own doctor this morning about another unrelated issue. I asked him about this swallowing and coughing to clear the throat. He said that it was all linked, the feeling or the need to clear the throat with a little cough is all controlled by nerves that could have been affected back in 2012. Sadly, he also said that as i'm now 4 years down the line, that he doubted i'd see any further improvement. That sort of flies in the face of what a different consultant has said about nerve repair, that being that nerves heal, or repair damage at about 1cm a month.

That said, my doctor indicated that i'd have good days where i'd hardly notice any problems. And bad days (like now) where it feels like a battle just to breath freely.

Cheers

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Hi Andy, My husband is 44 and was diagnosed with ADEM in 2014. He has had 4 relapses. After his latest one he has now being diagnosed with NMO which is similar to ADEM. He has had a chronic cough since his 1st relapse, some days it is so bad he actually gets sick, We thought it was a side affect of the meds but have since found out it is the ADEM/ NMO causing this. he has just been through 4 weeks or Rituximab infusions and is feeling worse than ever. Hoping it has helped though. Will have an MRI in another month, blood tests firsts...We have found nothing to help the cough, even used homeopathic throat sprays..

So best of luck, maybe someone out there has ideas on what could help.

Prayers and hugs to you!

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Hi BelS,

Thanks for your comments. My cough is more like a simple clearing of my throat, but, once carried out the feeling of needing to do that does go away.I'm also convinced that, when swallowing, a tiny amount of what is being swallowed actually travels upwards and ends up sitting at the very back of the soft pallet above the throat (if that makes sense)

The feeling stops once i gone to bed and lie flat on my back for a few minutes.

I'm seeing my consultant in March for my 6 month review.

As to my weak left leg, i have found regular walking helps..

Cheers for now..

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Hi Andy my son aged 31 was diagnosed with ADEM in April 2015. He still cannot swallow. He mostly chews his medication but is able to drink water. In the beginning he was unable to gargle but manages to do so now. Not sure when he will be able to swallow but he only has this issue since the ADEM attack. Hope this helps.

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I also go ADEM when I was 49 (just retired) and had dysphagia. Check that term out, it is very common for stroke victims to also have swallowing disorder. Your Dr. can do a simple test to verify this. All of the best re this.

Blossom

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OK Blossom, i am due to see my consultant in April, i will take to her about it at that time,,

Kind regards to you

Blossom said:

I also go ADEM when I was 49 (just retired) and had dysphagia. Check that term out, it is very common for stroke victims to also have swallowing disorder. Your Dr. can do a simple test to verify this. All of the best re this.

Blossom

11

OK Blossom, i am due to see my consultant in April, i will take to her about it at that time,,

Kind regards to you

Blossom said:

I also go ADEM when I was 49 (just retired) and had dysphagia. Check that term out, it is very common for stroke victims to also have swallowing disorder. Your Dr. can do a simple test to verify this. All of the best re this.

Blossom