I notice new symptoms in my body and mind. Not to scare you nor myself but I wonder:Do we have a higher chance in developing reuma, ms, me, or other serious diseases after ADEM? Or are (new or stronger) symptoms always correlated to ADEM? Anyone any information?
I noticed many changes as time went on. A change of diet and a New Doctor who followed the side effects helped a lot. Building up my Nutrients and Vitamins has made a huge difference. It has been 6 years, this Month when everything changed and I was diagnosed.
There is multifocal Adem too. I was diagnosed with this but eight months later it turned out to be ms… I had to adapt my life style and diet, give up smoking, limit drinking etc etc Read Swank’s and Jellinek’s diet recommendations. They help. Positive thinking and good psychology help. Plus rest. Dont overdo it and always keep time for yourself!
I am commenting just to ask a question that I have not asked in a long time. I was DX’d with Multiple Myeloma about 2 months after the ADEM attack. I believe the concensus is that the cancer had already weakened my immune system that caused me to get the ADEM. I would love to hear if anybody else has been diagnosed the MM. The chemo brain is definitely worse with ADEM looming over me.
I too was diagnosed with MM after my first MRI was read. Then they decided it was MS versus ADEM. One Dr. went with MS. One Dr. went with ADEM due to the infectious side of blood tests. The Radiologist is the only one who went with MM. That was in 2010. I have not had any problems with MM and no one agreed with the Radiologist.
Thank you so much for sharing your experiences. Although your health issues are so serious. I wish you all the best. My doctor phoned me to send me back to the neurologist to talk about my symptoms. I will ask for more tests, if anyone has suggestions I am glad to hear them.
I’d like to know as well!! I was diagnosed in 2008 and it wasn’t till this past nov. I’ve been ‘getting worse’. Trying to find help, but it’s super difficult. I have an apt this week w my PCP to try and figure out where to go from here. I’m now in pain about everyday, falling over quite often, and just recently started walking diagonal as I’m trying to walk straight which I looked up the 1st time it happened bc it was just SOO crazy!! (Found a medical term for this, I believe it was axaxia). And now it just happens outta nowhere. What things have changed for you?
Ataxia. Ataxia is one of the things that happens as a Result of Hemiparesis. Like I mentioned before, My PCP checking my Blood for Nutrients was the Biggest change for me moving forward. Vitamin D and B-12 are so Important in our Nervous System. I was 191 in B-12 and 3 on Vitamin D. Building just these two Vitamin's Back up takes time. I have been home bound, so being in the Sun was not an immediate answer. A MAJOR change in my Diet was the next BEST recommendation. Slowly, I have built my Strength Back. The Neurologists I have seen (4) have all said they know about ADEM, but I have experienced they know very little and know more about prescribing drugs for MS Symptoms. The ones I took, did more damage. I have been building up my muscles with a P.T. using a Walker. Falls ( Yes, I have done that twice, with set-backs) are so Horribly Frustrating. I have found building up those two Important Vitamins have helped me build up the Damage Done from ADEM. When you see your PCP, ask about your Vitamin and Nutrient Status.
My neurologist is on the fence now if I have ADEM or MS. My last MRI in November showed "no signs of progression" and the plan is to repeat the MRI every 6 months. It is my understanding from my doctor that both ADEM and MS have similar symptoms and both can respond well to steroids. After a spinal tap, blood work and MRIs, one would think that the diagnosis would be in. I have wondered if ADEM started everything and may have caused other issues.
On a happy note, my health has improved tremendously following a steroid treatment last August 2014. While there were some negatives for taking the steroids, I now have more energy, can walk and stand without pain. I almost feel okay. I was also put on vitamin supplements in Sept 2013 and continue to take these today. If you are not taking the B-12, Vitamin D, C, and a multi vitamin you should ask your doctor.