New ADEM Patient

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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New ADEM Patient

Postby awartenberg » Wed Apr 15, 2009 5:07 am

HI,
I was diagnosed with ADEM about six weeks ago..

I was hospitalized for 3 days and given massive IV's of steroids followed by a decreasing dosage of prednezone for 12 days

Overall I had seen a gradual improvement regarding the numbness in the last month. When I left the hospital, I was completely numb in both feet, my right leg, my groin, stomach, hips, lower back and both sets of fingertips. Over the past three weeks, the numbness had dissipated to where it was restricted to my right foot, my right knee, my fingertips and my stomach and in these areas, the numbness seemed less pronounced. In addition, I had dramatic fatigue after leaving the hospital. The fatigue, while still there, was not as severe as it was a couple weeks ago

However, over the past few days numbness has returned to my left foot and at the base of my testicles...2 areas where the numbness had disappeared. I am concerned in that I am feeling numbness in areas where it had disappeared.

My question is whether these ebbs and flows of numbness in certain areas should be expected as part of the recovery process or whether the return of numbness to my left foot and groin is indicative that the conditioning may be worsening again.

I would greatly appreciate any advise or input

Thanks and Best Regards,

Andy
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Re: New ADEM Patient

Postby akjosh » Sun Apr 26, 2009 12:54 am

Hey Andy,

I'm about 5 months post diagnosis, there are ups and downs. A lot of it depends on how much sleep I've gotten, what I've eaten or how much I've extended myself. I still have fatigue issues although less. My symptoms get worse as the fatigue sets in as well. I will tell you my whole right side was gone and although its came back to the point most can't tell, it feels different even to this day. I also lost all feeling and sensation on the right and its been slow to come back and like I said it doesn't feel the same.
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Re: New ADEM Patient

Postby Keith C. » Tue Apr 28, 2009 7:02 am

Hey Andy,

Sorry to here you are going thru this. The ebbs and flows or "wax and wane" are going to happen as you recover. I am at 7 months now and still have a few pains and heavy legs, but have good days more and more. The fatigue does get better, learn to pace yourself and get lots of rest. Neurontin has been a good medication for my "burning and pins and neeedles sensations." Some days I burn in new places, somedays I feel like everything is vibrating, but in general it gets better. A bad day or 2 was normal for me, but in general I improved week to week and month to month. It can be scary when a toe that has regained sensation for a week suddenly goes numb again, but my experience is that those are temporary setbacks and just part of the recovery process. However, if something goes numb or increases in pain for a long time I would call my neuro.

I was told that this is a slow recovery, but didn't fully understand how slow. It has taken months to get me back to around 90% mobility. I still have afternoons when I just have to go to bed. The key is after I rested I get back to walking, even when my feet scream and my torso feels like it is in a vice. I believe that it has been very good for me as now i get around with just a slight limp.
Be patient, but don't just sit and wait. Excersise, eat right, and rest. This is a lonely ailment and can mess with your mind. Its highly technical to explain to someone who hasn't experienced it, and some of the symptoms are so embarassing I don't even like to tell my wife. (Like bowel and bladder dysfunction.) But stay positive and find a good friend that will listen when it gets rough. Watch out for depression as it was a part of the recovery for me and I guess for lots of us. These are just my opinions, but your symptoms sound similar to mine and just wanted to encourage you to forge ahead even when you experience some unexpected stuff from day to day.

Take care,
Keith
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Re: New ADEM Patient

Postby wajabi38 » Mon Aug 03, 2009 9:24 pm

Hi Andy, I was recently diagnosed with ADEM, my story in some stances is similar to yours, but in my case is kind of stone bladder, numbness (mild) in my tailbone, occasional tingling in my toes and fingers, and mild bowel issues, but overall I'm back to an "almost" normal,life, a little slower running(I'm a COP and a Soldier), and gained a few extra pounds while on treatment (steroids), also developed dry eye syndrome, but what I hate the most is that I have not been given any follow up medication, none, zero, nada, and my neurologyst here at tha San Juan VA, ain't telling me Jack about it, what should I do? :-s
Ezequiel Pereira
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Re: New ADEM Patient

Postby Jenny Hill » Fri Aug 21, 2009 8:17 am

Hi,

I am over 5 years on from being diagnosed and I have found that my recovery has stopped. I haven't fully recovered sensation in my lower half and my fatigue is severe a lot of the time. I have trouble with my speech sometimes and have issues with both bowel and bladder. I struggle to socialise because I become so fatigued but remain reasonably positive, well in all honesty I do somtimes wear a positive mask as it does get me down at times about how everyday activities such as filling the kettle and lifting pans is such an effort. At least I am walking though and working, even if I daydream a certain percentage of the day.

Postitive thinking!!!!
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