Hi. My husband, Mario, has a neurologist appointment in a couple of weeks. I feel as though they don't have a total grasp on the symptoms(for lack of a better word) that he and the rest of you are experiencing now that he is 1 1/2 years post-onset. At one visit the neurologist felt that his walking was "affected", meaning that somehow he was doing it on purpose. He has very sensitive areas especially across his chest that he originally described as itching, but it has now become very intense sensitivity to the point where he has his shirt off as much as possible. The neurologist did not see how this was related to ADEM. When we describe the fatigue or medicine head feeling he tries to prescribe another antidepressant. Would some of you who are 1+ years post-onset list some of your symptoms that you experience? You all describe in different discussions what you feel, but it would be helpful to see it all in one list. I feel like I would have some ammunition to take with me at this next visit to show it is not just him. Also, if any of you had success with any treatments like acupuncture or any other treatments that alleviated some of the symptoms that would be great too. I don't feel as though the doctor's office has been insensitive, I just feel like there is so little experience with ADEM patients that no one knows what to do with them. Thanks, Sylvia.
Hiya - sorry to hear you're having troubles. I'm about a year out of hospital and my symptoms appear very different so not sure I can be of much help, other than to say it is a pretty rare condition so as you say the Doctor may not have much experience.
The problem really is that it affects the brain and so can cause any range of issues - walking and sensitivity among them. Mine are mostly non physical and relate to memory, particularly names and faces. I think it depends on what caused the ADEM (although I realise ADEM is more of a 'we don't know' diagnosis, certainly in my case) i.e. viral/bacterial/autoimmune as to what you can expect in recovery.
If Mario is on any medication at the moment that may explain the itching, but other than that I'm not sure about treatment as I was left on high dose steroids for several months with a taper, but since then have been quite fortunate and don't have to take anything.
Sorry I can't be of more help, and I hope it clears up soon!
I agree with you after what I have experienced. I found out 3 months ago a Neurologist I saw in 2010 was supposed to diagnose my symptoms from ADEM vs MS. I was never told this during the diagnostic process. After a Nerve Test, an MRI and a Spinal Tap, I was told MS. I kept asking questions about a Strep Infection I had been fighting initially. The neurologist refused to address an infection. An infection of any kind. I didn't ever think my Diagnosis with MS was correct. After that diagnosis, it has been tough to find a Doctor who would actually listen to my side of the symptoms I have experienced and why I never thought MS was an issue. I found one. She listened. She went through all of my medical paperwork in 15 minutes and asked me which Neurologist ruled out ADEM. I questioned her about ADEM. What is it? I have never heard of it. We had a great educated discussion and she pointed out that all throughout my paperwork it said MS vs. ADEM. The Neurologist I was seeing NEVER mentioned anything about ADEM. I don't think she knew what is and didn't address it because she didn't. I am now seeing my 6th Neurologist. Before I made an appointment, I asked if the Doctor I was going to see knew anything about ADEM, because I didn't want to waste anymore time or money. She called me back and said Yes, he does. Moving forward, I have seen him 3 times, He started over with re-doing Tests. I am fighting an infection. I picked up a Group A Strep infection in the beginning of this and I still have it. Years ago, I was put on an antibiotic that did not kill the infection and there was no follow up by my primary doc. Now, this new Doctor said steroids should get me back where I was in life, but I can't start steroids until the Strep is gone. I have weakness in my left leg, more than the right. Muscle weakness in my legs is the biggest issue.. Itching has always been an issue. Eyes, ears, nose and my back. I saw a Dermatologist. He told me my body was fighting something from the inside. Nothing the Dermatologist offered helped. I have never been in a Hospital for this. I turned to a Health Food Store for suggestions. I changed my diet a lot. Major changes. Their help has been the best so far. I am on no medication currently. I have been on several antibiotics with no long term results. I have been dealing with this, going on 6 years. I don't know if this helps, but I know what others have gone through and asking questions helps.
Thanks,
Sonie
One of the biggest challenges is finding a neurologist who has more than a passing "I looked it up on the internet" knowledge of ADEM. I highly recommend using the doctors resource list on www.myelitis.org as they have a pretty substantial list.
The others who responded are right - everyone is impacted differently, hence the "disseminated" part in the name. Just like MS can manifest differently in each person, so does ADEM.
I would find a new doctor. My first neurologist told me 3 months out of the hospital, "Go back to work. You're fine." Yeah, he knew nothing!
Good luck,
LauraK
Has he seen a chiropractor? Thoracic disc symptoms can be itching?
Lynn
Thanks to all for responding. Mario is not great at describing what he is experiencing and the word itching is the best he can come up with. He says it is more intense and feels like it is always changing. He only feels it when it is touched, or like the barest rubbing of cloth over his skin. When he does have a shirt on he has his hands up under the shirt to hold it away from the skin. His legs are also very weak, especially the left one which the foot will drag. The chest sensation started about 4 mos into his onset, and I had recorded mention of it in my notes. Some of you have described sensitive skin on back and face. I just feel that his quality of life would improve somewhat if he could make this sensation go away. I have considered seeking another opinion from another neurologist, but this one has seemed to be right on w/ diagnosis right from the start. I have no doubt he is very smart, but it seems to end at the diagnosis and now we are in a different realm. I have found out more from this support group than in a whole year now of going thru this w/ my husband. He tried physical therapy and the PT was so unfamiliar w/ it that he tried what he would do w/ someone w/ MS, then he gave up after 10 visits and told us that he could not improve balance when the myelin is not there to keep the hyper-reflexivity under control. We are going thru the dietary changes and having some fun w/ it. I didn't know vegetables could taste so good! So far I don't see much change in Mario, but I have lost weight:). Well, thanks for your responses and we will see how this appointment goes, and maybe we will check out another doctor after that. I will look at the website that was suggested. Thanks Sylvia.
I understand the frustration. I tend to get a fiery, burning sensation down my left arm which was AWFUL during the actual onset attack. My wedding ring feels like a lightning rod, and sometimes I just have to take it off to get relief.
I don't know if it's going to work, but I'm just getting ready to start homeopathy. I did it once before for severe hormonal imbalances, and it made an amazing difference although it took 2-3 years to realize. I'm hopeful that this will help my symptoms.
I'm not recommending it necessarily, but I do believe that traditional doctors are limited in what they have to offer. My wonderful neurologist has been offering me "bandaid" meds to help with symptoms, like Alzheimer's medicine for my memory or ADHD meds for my focus which I have refused. I'm more interested in trying to heal than in masking the problems and possibly adding more to the list.
Good luck Sylvia & Mario!
LauraK
Laura. A co-worker of mine started homeopathy for migraines. She has had a marked improvement in the migraines since she started and she asked about us considering it for Mario. She also started the same dietary plan that we have as it is supposed to help w/ migraines, ADHD etc. The book is Grain Brain. The author is a neurologist. He states it is possible to regenerate brain cells, which is what caught my attention. He tests all his patients for gluten sensitivity and insulin resistance. The idea is to go gluten free, and limit carbs and sugars. High fat, low carb. Not too hard to do except for getting over pasta and bread. We do cheat on weekends and I don't see that it makes much difference, but at least we are eating better. I don't know why doctors always reach for the Rx pad. I believe we have forgotten more about the natural healing benefits of plants and herbs and what can assist our bodies to heal than we will ever know. Keep us all in the loop w/ the homeopathic doc. Sylvia