Newbie -- My Experience So Far

I'd like to relate my experience in the hope that it might prove interesting and helpful to others.

About 10 weeks ago, I awoke in the middle of the night with a case of severe diarrhea that continued for a couple of days. I had eaten some chicken for dinner that might not have been quite fully cooked right before the GI attack and attributed the attack to that.

I hung in there for a week -- the diarrhea improved quite a bit -- but I could tell that my GI track was still not back to normal. I was also having other symptoms associated with food poisoning such as a slight fever and chills.

Sometime during the second week, I noticed a numbness in my right trunk that later also moved down into my right thigh. I thought this might also be associated with food poisoning but was concerned enough to make an appointment with my internist (primary care doctor). My doctor sent me to the lab for a full blood panel but everything came back normal.

The third week I was driving down the road and noticed that I was having double vision -- instead of seeing a single car in front of me, there was a double image of the car horizontally to the right. I went back to my internist and he said it was time to see a neurologist. I was also starting to have difficulty with my balance and with walking properly. At the end of that week, on Friday, I saw a neurologist and explained how my symptoms had developed. He performed a basic neuro-exam and scheduled me for an MRI early the following week.

On Monday morning of the following week, I noticed a numbness in my left upper lip while I was brushing my teeth. My smile was crooked and I couldn't spit water out of my mouth properly. At that point I decided it was time to just go to the ER. I presented myself at the ER, described my recent history of symptoms, and they performed an MRI that showed a number of "lesions" on my brain and spinal cord.

I spent 6 days on the neurology ward. The first 3 days were spent trying to diagnose me, trying to find out what those lesions might be. I was given all manner of tests -- two more MRIs (one a full body MRI), spinal tap, echo-cardiograph, ultrasound, and finally, a brain biopsy. For the brain biopsy, which required general anesthesia, they identified the most accessible brain lesion, drilled a hole in my skull, and stuck a very small needle bout two inches into my brain to remove a small amount of tissue from the lesion for analysis.

They considered several things, a few of which were ruled out rather quickly. Stroke, no; not consistent with symptom development and evidence of such not visible on MRI. Vasiculitis, no; can't remember why they ruled that out. Late-onset MS, maybe; but again, not consistent with imagining of the lesions. It came down to ADEM versus brain cancer (lymphoma), which is why they did the full body MRI and the brain biopsy. Both of those tests were attempts to find out whether or not I had brain cancer. They wanted to make sure that they sent my down the property treatment pathway -- the pathway for ADEM is much different than that for brain cancer. Fortunately for me, they couldn't find any evidence of cancer anywhere on my body, so almost by default they reached a diagnosis of ADEM.

My final 3 days in the hospital were spent getting 3 administrations of IV high-dose corticosteroids; they do this in the hospital for safety reasons because some people may have seizures or convulsions due to the high-dose steroids and they want to be able to quickly and properly deal with that eventuality.

After I was discharged from the hospital I was given an oral, tapering course of corticosteroids that lasted about 3 weeks.

I've been home now for about 5 weeks. My symptoms have generally improved. My balance and walking are significantly better -- I never knew it could be so satisfying to put my pants on standing up. The double vision is also significantly improved. I still have considerable numbness and tingling on my right side but that also seems to be improving, albeit gradually. I try to evaluate my condition week by week rather than day by day. From day to day, things can worsen; week to week gives a better picture, I think.

I had my first follow-up MRI last week. According to my neurologist several of the lesions were significantly smaller, although the did find one small new lesion that was not on the previous MRI. For now at least, he's attributing the new lesion to the tail end of the initial attack and not as a new attack, or recurrence.

I'm now cautiously optimistic -- my condition does seem to be improving -- but I'm certainly not cocky. I think the primary risk at this point is recurrence and possible development to late-onset MS, which would of course be a major setback.

There are a lot of things that I haven't mentioned in this original post, so if anyone has any questions, I would be happy to respond as best I can.

I wish you the best with your recovery, Rich. ADEM is a scary experience. I am so glad you got a diagnosis and treatment. Keep us posted.

I was lucky, diagnosing me, went a little better. My husband is a physician, so I was somewhat ahead already. After 3 weeks of appearing normal, except I didn't walk well, he ordered a cervical MRI because I already have cervical issues. The radiologist found my lesion in the cervical spinal cord. He had seen one other case of ADEM when he was in medical school, many years earlier. He told my husband to get me to the hospital for a spinal puncture. The doctors there, at a well-known hospital, final agreed to his diagnosis after 6 hours and computer research. I also had 4 1/2 days of IV cortisone. I didn't sleep for 2 months after that. Anyway, a little over one year later and with the exception of symptoms in my hands, everything is pretty much normal. I also had the vertigo problems and numbness symptoms through 3/4 of my body. They also, tried telling me I have MS, even though I don't have those symptoms. I am glad you are improving.


Rich, I am another newbie here. I was gardening. I stepped in something that made my feet itch and swell up horrible. Walking was close to impossible. My feet were huge. Crocs is all I could fit into, barely. This was in the Fall 2008. Due to me being down with this, my husband started ordering in and picking up food. Next was food poisoning. Next were Flu Symptoms for 4 Months. I was dead in bed. My husband decided to open a can of soup for dinner. While I waited, I got such a high fever I lost consciousness. When I hit the floor, he pulled me up. I Headed to bed. Woke up 4 hours later with cramps from hell. Next, I urinated pure blood. My PCP refused to call me in anything. I had to show up. When he did see me, it was a strong Antibiotic. Go home. Sleep. You look horrible & running a bunch of tests would be lengthy. Moving forward with weakness like I have never experienced. PCP decided to run tests. Nothing. Back on an Antibiotic. It actually helped again, but I still had the weakness in my feet and that had moved to my calves. Next, my back was killing me. More tests. Nothing. The weakness increased. I had a pretty good fall. PCP sent me to a Rheumatologist. Blood tests show a High ASO Titer. Then to a Neurologist. You have MS. I never thought MS. I could feel infection. MRI, Nerve Test, Spinal Tap. 2nd Neurologist. Lesions! MS. 3rd Neurologist.Possible Infection. I could still feel I was fighting an infection. After 2 years of begging my PCP to look for an infection, he did. I had been fighting a parasite. All this time. He put me on Mebendazole for 15 weeks. Hard on a human body. The 2 1/2 years that had passed caused major damage. The parasite entered my skin, while gardening, entered my blood system, entered my spinal cord, entered my Blood Brain Barrier, now..Lesions! Now, it's 2014. I did a major diet change in 2011. Trying to help myself. No Doctors were listening very well at the time. I think that saved my life. I refused any MS Meds. I refused an MS diagnosis. Now I am on Neurologist #6. He listens. He can see from all of my numerous tests, what has happened. Currently, due to my Immune System being so drained for so long, I had picked up a Strep Infection. Since my Neurological damage is being attended to by him, I still need to see an I.D Doc. I was told that my case could have easily been ADEM with other complications. I started steroids 3 Days ago. My goal is to walk by myself without a walker. Get back to driving. My skin and eyes have had infections galore along way. I feel better now that I have support from my new Neurologist, new PCP and new Infectious Disease Doctor. Frustrating times in my past. After what I have gone through for the last 6 1/2 years, I wonder often about parasites. The undetected symptoms, a Doctor never considers. I can't imagine I am the only one in the U.S. Good luck! I had my 8th MRI 2 weeks ago. No signs of lesions. I do not have MS. Motor skills have been affected, but P.T. 3 times a week is improving my strength. My MRI showed 1 Band. We think locating the GAS strep infection will help end my battle. I have learned so much from this group, I hope this helps someone else. Sonie

I thought I would provide an update on my condition. I was discharged from the hospital with my ADEM diagnosis in mid April, so I guess it's been 5 to 6 months. I had 3 days of IV steroids in the hospital followed by a 3-week course of oral prednisone at home; that's all the meds I've been prescribed. I've also had a little bit of PT.

I have improved significantly, but still have some residual symptoms that I hope will pass. When I left the hospital I could barely stand or walk -- my balance and gait were very bad, and I could only walk with assistance. This has improved greatly; I can now walk quite well by myself and with pretty good balance.

Most of my numbness has cleared up, but it still crops up a little now and then. The odd thing about the numbness is that it comes and goes and also seems to move around a little with respect to location.

My double vision (problem with muscle nerve in right eye, according to eye doctor) also comes and goes. Seems to reappear when I am a little tired.

And speaking of tired, my energy level has improved but still isn't back to normal. I am now back at work three days a week, and I am pretty beat after those 3 days of work.

I still have a bit of that headachey, hung over feeling -- you guys know what I mean -but my head seems to be gradually getting clearer.

I am hopeful that I will continue to improve. I am a mature guy of 66 years, and I reason that everything takes longer to heal when one is older (it now takes two weeks for a minor bruise to heal that would have healed in two or three days in my younger days).

I sometimes wonder if my neurologist isn't a bit conservative with the steroids; I've been given what I gather is about the minimum amount and I tolerated them well (at least I think I did), but my neuro's position at this time is that if I am still gradually improving, with no major setbacks, then no more steroids.

I expect that in another month or so I will have a follow-up MRI; that will be interesting.

Everyone take care; I appreciate this board. It's really true, I think, that patience is a big deal with recovery. Don't be in a hurry, make yourself as comfortable as you can, treat yourself right, and see if time will do the work.