Hi All, I am new to the group, so firstly thanks Ken E and FCMMARK for your welcome and encouraging words.
My husband has had ADEM since June 2014, he is 43 years old. Previously was a healthy chap with only 2 days sickness at work for the past 23 years. He started off with a suspect Ear infection in Feb 2014 and by June was hospitalised and diagnosed with ADEM after MRI and LumberPunch. Follow up MRI in Aug 2014 showed 100% clear of all lesions in brain and upper spine. he was told he should have a full recovery. However he still suffered from terrible side affects and remained on steroids and various other meds. ADEM came back in Dec 2014 he was-rehospitalised, another 5 days of intravenous steroids. MRI (x2) and lumberpunch. The pain is worse at night still, he has muscle spasms in face, arms, legs, and have noticed quite a change in behaviour and moods.
The worse though is the dizziness he experiences and also slurring of speech and off balance. The neurlogist booked him off for 2 weeks to rest now, but after 1 week he has gone back to work as he is worried for his job. Have also noticed a major loss in appetitie, yet all the steroids have puffed his face up quite badly. Most swollen on the left hand side where the initial ear infection was and where the ADEM was at its worst.
Has anyone else experienced such extreme dizziness and being off balance, Any suggestion on any natural therapy that could help with these symptoms. I have been trying to find a support group in South Africa but no luck yet. Brian is being treated by Dr Judy Green at St Augustines hospital. she is the neurologist there. Not sure if she is the best as we cannot find much information out there on this diesease in SA. She now wants to motivate for an IVI Polygam treatment, does anyone know much about this? She says there is no gaurantee it will help and its very expensive. But as far as I am concerned we have nothing to lose by trying it, even if we have to pay it all
Any suggestions or thoughts on doing this treatment and how we can help him with his dizziness and balance would be wonderful!
I had an ADEM in 2012 and still have problems with dizziness. I have tried a few nose sprays but can't shake the dizzy periods. Doctor is not sure if it is a part of the ADEM or something else.
Hi there. Your story sounds very familiar.... First sumptoms December 2012 age 47 after a cold. MRI, lumbar puncture with 30 white cells, 5 IVs if solumendrol.... Then back home for a while and hospitalized again in February for a full check up. Another lumbar puncture followed by another 3 MRIs..... The worst came in July of 2013 with a major relapse. Had 7 IVs of solumendrol (2 more than the protocol as docors were scared) and was left unable to move and think properly for close to 6 months... Now, things are better but with pain in the spine, my hands and feet are numb and dizziness has become a partner in life.
Try to tell you husband to avoid the heat of the summer, though by now it must be colder in your place, catch a mid day nap and to avoid excessive fatigue. Dont really know when this dizziness is going to leave me alone but close to 3 years after the initial incident and after 7 MRIs I am still fighting it.... Memory problems are slowly getting fixed and so are cognitive problems. Believe me it does take time and patience. Just a piece of advise for cortisone, I was on it several times but no blown up face. Avoid salty and sweet food at all costs when on it and during tapering off.Let me know if I could be of further assistance. I lived in SA for close to 10 years and I would be glad if I could help your husband as his case sounds very familiar to mine....
I had brutal and unrelenting dizziness. We now think it is "migraines". I try breathing exercises. I'm trying massage therapy, too. Those kind of help.
Hi All, thanks so much for the feedback everyone. Most helpful. Papegeo, yes your case sounds very similar to Brian's. If you dont mind I will send you a friend request and maybe we can chat further at some stage. Did your ADEM ocur whilst you were in SA or where?
Barry - Meclizine 25mg for dizziness - awesome thanks! will look it up here!
Occicipital - TBI - did look them up, seem remarkedly similar the 2 disease, yes, thanks :-)
Avoiding summer heat is a problem - Brian works in construction so spends most of his days outdoors in the brutal SA / Durban humid heat. after nearly a year he can now finally wear a floppy hat and his hard hat but not for long. Never realsied this was such a hectic disease. Neurologist made out like it was once off and a 6 months recovery. Effectively he has been ill since Feb 2014, so its a year and half now with still terrible side affects and 2 confirmed ADEM full blown relapses.
Hi there. I was in Cyprus when things happened.....I was treated in several hospitals accross Europe along the way.Just one question: You mentioned 2 relapses. Are you sure they did not look into something else? Eg MS? Dont wanna play the expert but 2 relapses sounds pretty weird. Weather in Natal could be a killer, you are right. I used to live in the Mother City, Durban was great but weatherwise not the ideal place to live for a person with an autoimune disease. Please stay in touch if I could be of further assistance
Hi again, sorry correction - he has had 2 cases of full blown ADEM within 6 months of each other. Hospitalised June 25th 2014 - 5 days steroid drips, MRI showed severe brain swelling and lesions on brain as well as down spinal column. Neurologist said he would have been in a coma or worse in a matter of a day or two if we had not got him to her in time. August MRI showed 100% clear. Was told to expect full recovery but he still felt liike hell. 6th December 2014 re-admitted, ADEM back, MRI x 2 showed lesions back on brain and down spinal column but not as severe they said as 1st time. Lumber punch again but 2 done - they say no cancer and no MS again. Concerns on changes of liver blood tests since June which could be from meds. he has started a chronic cough for the past 3 months, started feeling worse last week Monday. Back to Neurologist - she said bad Flu, booked him off 2 weeks. He stayed home Tues to Fri, back at work this week as serious building deadlines. Worry about his driving to work and home in the dark as bright lights affecting him. Batttling with dizziness, almost fallen a few times lately, even when sitting down, shakes head. also muscle spasms, twitches in upper, lower arms and hands, as well as legs. keeps moving legs. in pain at night, lying down is worse. Groans in sleep most nights, very light sensitive, wakes up confused. He has broken a window trying to climb out to find the toilet, and our room is on the top floor of our double storey house! do you think we should go for a 2nd opinion or is this normal to most ADEM sufferers. we just so confused as she said he would be fine in 6 months. A year later and more, and his illness affects him day and night, and no answers can be given about the ear that keeps playing up. He feels like he is hearing under water in the 1 ear where everything started they say. sometimes gets discharge from ear even. She refered him to an ENT - the ENT says his ear is fine, but his balance is out. Neurologist says ear is not her problem when we go back and see her. She says it may have been the trigger of the ADEM but it is not the after affect. Yet if his ear kereps troubling him perhaps that is why the ADEM keeps coming back... so frustrating. Did you ever feel depressed or that you were dying or wanted to? Brian is talking scary sometimes... wanting this all to end, says his time is near. Tells me not to worry, his will is sorted. I'm like freaking out here! I love this man but he is a stranger to me, and I have to keep the household running with 2 boys aged 12 and 9 who cannot understand why Dady gets so cross and is always tired.. Wind is his worse enemy! Does anyone else have that problem? He cannnot tolerate wind against his head. so glad for everyone's input and support, thank you all so much xxx Have added Neurologists latest letter to motivate for some IVI Polygam treatment, and then 2 samples of medical scripts to see what meds he has been on. Would love anyone's opinion on the meds. and has anyone had this IVI treatment she is talking about? Did it help? I believe its costly and no gaurantee it will help, but she says it has helped some cases. Are there any side affects or dangers? or is it worth us trying. I want to try anything! I am even learning Reiki to try on him, but not sure he will let me! :-(
BelS you have a got a lot on your plate right now. You are shouldering it all yourself. Right now your husband may not even be able to express what he thinks and wants. Right now he is sharing a lot of stuff that is real to him and scary to you. This is the illness talking, not him. Look for a traumatic brain injury support group. That will help immensely. ADEM causes Traumatic Brain Injuries, too. I got one. What you said about your husband make me think of it.
6 months. We heard that number, too. Nobody really knows. It is OK though. Recovery will continue and things will get better. Reaching out here is part of it.
BelS said:
Hi All, thanks so much for the feedback everyone. Most helpful. Papegeo, yes your case sounds very similar to Brian's. If you dont mind I will send you a friend request and maybe we can chat further at some stage. Did your ADEM ocur whilst you were in SA or where?
Barry - Meclizine 25mg for dizziness - awesome thanks! will look it up here!
Occicipital - TBI - did look them up, seem remarkedly similar the 2 disease, yes, thanks :-)
Avoiding summer heat is a problem - Brian works in construction so spends most of his days outdoors in the brutal SA / Durban humid heat. after nearly a year he can now finally wear a floppy hat and his hard hat but not for long. Never realsied this was such a hectic disease. Neurologist made out like it was once off and a 6 months recovery. Effectively he has been ill since Feb 2014, so its a year and half now with still terrible side affects and 2 confirmed ADEM full blown relapses.
Ok, this is my story in short as the side effects sound very similar:
December 2013 numb hands after a severe flu while on holidays. Was sent for an MRI (some lessions) and lumbar puncture (30 white cells). Admitted to hospital in February for a complete check up, CT for lungs, 2nd MRI, 2nd spinal tab (3 white cells). Doctor found an active source in the MRI so he prescribed another 5 iv s of solumendrol. In the meantime my feet started to feel numb alongside my hands and I started to get dizzy. 3rd MRI in April clean. In June I started to feel weird, doctors sent me for another MRI that showed a relapse. Another 5 iv s of solumendrol. In October I lost control of my motorbike as I had an epileptic seizure. Hospitalized again and..... goodness me a lession looking like a fried egg on my brain, so another.... MRI. 7 iv s of solumendrol and Keppra 500s for the epileptic seizures.
How I felt? Unable to walk straight througout 2013, cognitive problems, anger, frustration disappointment, dizziness.Could hardly type a letter of reference without making at least 10 mistakes. My secretary was treating me like a retarded person and would not let me push the send button on an e-mail without checking it firs. Getting tired very easily, unable to use my arms properly, even to shave. Frequent visits to the toilet. Yep, as you said I started to see the "gates". Funny enough I only confessed this to an ex girlfriend of mine as I did not want to frustrate my family and next of kin.2014 started a bit better and those who witnessed "the fall" in 2013 talked to me about the difference they saw in me. But inside me I was still feeling weak. Dizziness was always there to remind me of what I had and both feet and hands numb.
2015 slowly getting better. Almost no cognitive problems only memory gaps and inability to memorize/learn new things. Let me mention that in the meantime I was wearing driving glasses at night as lights seemed to annoy me and sunglasses throughout the day. No problems with the wind. Very short tempered and very emotional.
What about now, 2 years after the last relapse? Another 2 MRIs ever since were clear, of course the old lessions never die as remyelination as such does not occur. Still short tempered, sensitive to high temperatures but not unable to tolerate (we had 40 degrees C today), sentimental and in need of compassion and peace of mind, something that I do not have at home and something that makes me feel even worse. Feel much better at night than during the day. Dizziness dizziness dizziness....
Above all I need my time and space and if I dont get it I make space for it no matter what
BelS said: 2nd
Hi again, sorry correction - he has had 2 cases of full blown ADEM within 6 months of each other. Hospitalised June 25th 2014 - 5 days steroid drips, MRI showed severe brain swelling and lesions on brain as well as down spinal column. Neurologist said he would have been in a coma or worse in a matter of a day or two if we had not got him to her in time. August MRI showed 100% clear. Was told to expect full recovery but he still felt liike hell. 6th December 2014 re-admitted, ADEM back, MRI x 2 showed lesions back on brain and down spinal column but not as severe they said as 1st time. Lumber punch again but 2 done - they say no cancer and no MS again. Concerns on changes of liver blood tests since June which could be from meds. he has started a chronic cough for the past 3 months, started feeling worse last week Monday. Back to Neurologist - she said bad Flu, booked him off 2 weeks. He stayed home Tues to Fri, back at work this week as serious building deadlines. Worry about his driving to work and home in the dark as bright lights affecting him. Batttling with dizziness, almost fallen a few times lately, even when sitting down, shakes head. also muscle spasms, twitches in upper, lower arms and hands, as well as legs. keeps moving legs. in pain at night, lying down is worse. Groans in sleep most nights, very light sensitive, wakes up confused. He has broken a window trying to climb out to find the toilet, and our room is on the top floor of our double storey house! do you think we should go for a 2nd opinion or is this normal to most ADEM sufferers. we just so confused as she said he would be fine in 6 months. A year later and more, and his illness affects him day and night, and no answers can be given about the ear that keeps playing up. He feels like he is hearing under water in the 1 ear where everything started they say. sometimes gets discharge from ear even. She refered him to an ENT - the ENT says his ear is fine, but his balance is out. Neurologist says ear is not her problem when we go back and see her. She says it may have been the trigger of the ADEM but it is not the after affect. Yet if his ear kereps troubling him perhaps that is why the ADEM keeps coming back... so frustrating. Did you ever feel depressed or that you were dying or wanted to? Brian is talking scary sometimes... wanting this all to end, says his time is near. Tells me not to worry, his will is sorted. I'm like freaking out here! I love this man but he is a stranger to me, and I have to keep the household running with 2 boys aged 12 and 9 who cannot understand why Dady gets so cross and is always tired.. Wind is his worse enemy! Does anyone else have that problem? He cannnot tolerate wind against his head. so glad for everyone's input and support, thank you all so much xxx Have added Neurologists latest letter to motivate for some IVI Polygam treatment, and then 2 samples of medical scripts to see what meds he has been on. Would love anyone's opinion on the meds. and has anyone had this IVI treatment she is talking about? Did it help? I believe its costly and no gaurantee it will help, but she says it has helped some cases. Are there any side affects or dangers? or is it worth us trying. I want to try anything! I am even learning Reiki to try on him, but not sure he will let me! :-(
My daughter was diagnosed July 5th of this year. One of her largest symptoms was the extreme dizziness . Double vision and nausea. She is still having trouble with the dizziness. However like I said we are in the infant stages of recovery.
Wow "guys"! Thanks so much for all this sharing. I'm almost too scared to share this all with Brian but I think maybe if he realizes he is not alone he might actually join up and then he can chat and get "it" all out there. I feel so relieved knowing that there are so many people out here now that I can actually talk to and reach out too even though it is not in person. I do feel like I am holding this family together and it is taking its toll on me, but more so I feel so helpless that I cannot help my husband. I can see that just like you, Papageo, Brian does also need his space and time. With 2 young and loud boys, it’s very hard, but will try and do more for him on that. Wish we could get away from him for a weekend or he go away for a weekend, just to have that peace... might be worthwhile. I am so worried about his driving alone, especially as you mentioned the motorbike accident - I know it’s a real reality it could happen. Also, his work does not know the full extent of his disease. They don’t realize how much it takes for him just to get up in the morning. I think he also hides it very well at work. In SA jobs are hard to find, and although Brian is very good at what he does, he has a lot of pressure on him as he manages very big construction jobs, so long hours, meetings, pressure and deadlines, with lots of noise going on, and obviously being exposed to the elements daily does not help! I think he is so worried about keeping his job so provide for his family. He is the main bread winner. I wish I could take that pressure from him. We could manage on less, but keeping a good medical aid in this country is essential.
I just lost a good friend to cancer which was curable but she had no medical insurance, and was in and out of government hospitals waiting for tests and machines to be fixed, and in the meantime she was just dropping weight and in her last 2 months was totally bedridden, and finally passed away in may this year. By then we had got her in to a frail care facility as we could no longer manage looking after her between my Mom and I - she had no family in SA. It’s been a hard year with all that as well, I was devastated as if she had of had medical insurance she could have been tested and started the treatment in the January already at a Private hospital. So no matter what we need to keep both our jobs to keep a good Medical for Brian and our Diabetic son... Whew, so almost 3 years on and you still feeling the after affects? So sorry, I feel for you... I read some stories like this, and you know my friends said stop Googling; it’s no good reading all the negative stuff because people don’t by nature write about the good things. And if I become negative so will Brian, even if I hide what I know from him. I would not want to though. I feel it’s important to know exactly what is going on and what to expect. That way you don’t always feel alone and crazy. And in this support group and I can feel that people really are here to help and share and advise in the most positive way they can. So hopefully I will be soon on that end where I can help and advise others...
I am so sorry about your daughter Crystal. I feel for any parent in this group who has children going through this disease. It’s just not fair when children suffer. My youngest has it easy when I read what many of you parents children are going through. He has Type 1 Diabetes (Insulin dependent - his pancreas no longer functions at all) Was also caused funny enough by an autoimmune response to Chicken pox of all things when he was 2 years old, and the body went and attacked the Beta cells in his pancreas until they were all gone. So he lives for testing and injecting himself. He also has severe allergies and bed wets still at age 9 years because his kidneys produces excess calcium and they have been unable to find a meds to help. So for now he can never have a sleep over at a friend, or go on any school or sports tour because he has to wear adult pull-ups at night! My poor boy, but it’s good to share as now I see his life is bliss compared to what other kids are going through! Makes you so much more understanding and willing to help other people when you realize how much suffering is going on in this world that people are blissfully unaware of! God bless our kids... Sending prayers of love, light and healing to all of you, and your children.
Your husband is lucky to have an understanding wife. In certain other cases patients who also happen to be the bread winners are pushed to assume house duties after 13 hours of split shifts, 7/7 no days off..... So when you wake up at 7am take a break at 15.00 before you resume work at 19.00 till midnight, what can you do between 15.00 and 19.00? Sleep for a good two hours and then play with your kids for another 2..... Cause somebody has to work in the household, healthy or not, cause this somebody has to bring money in to keep things going.. Especially when nobody knows at work as it is the case with Brian and myself, on top of everything you have to pretend that everything is perfectly well.... This is when you go bananas when your efford is not appreciated by those you are aware of what you are going through.
Coming to the IGIV treatment I looked into it, even had an offer to have it done for free by a doctor/friend but I had my reservations about it so I chose not to.
Another issue is the health system of each country. In the "new world" like ZA and the USA where private insurances dominate it could be more difficult for a doctor to pronounce someone with MS as the treatments are expensive where as in the EU where the NHS is based on a goverment sponsored basis doctors are more at ease to make a decision prior to exhausing the limits...I believe that had you been living in an EU country your husband might have been diagnosed with MS rather than expect another relapse before they do so. Personally I am trying to have as many opinions as possible, 1st ,second third. Have alredy seen several doctors but keep asking when the opportuinty arises.
Last tip off, coffee helps a lot at least in my case
Thanks for your honest feedback. Brian is seeing the Neurologist today again, so lets see what she says. Not sure we will go ahead with the IVI treatment if Medical Aid declines as I believe it is very expensive. But I really dont know, at the same time I think we are willing to try anything if it may help, You might be correct about the MS, but for now the MRI's and lumberpunches come back as ADEM. I can just pray they are correct as MS is just a whole new thing to get around and I dont think I can cope with that right now.
I do wish he would see another specialist, but he feels comfortable with this one. Brian enjoys his coffee - but only has 1 cup in the morning. Perhaps he can try some more and see. Each person is different I know, but any tip sharing is one worth trying! Thanks again.
BelS, I know our stories are similar and not in many ways, but I definitely feel your need to have some space sometimes. Maybe you can find our story on here. I come here often and let it out!!! We were told that if ADEM repeated that it was most likely MS not ADEM. But then again there are so many Dr.s that don't know enough about ADEM to know what to do or say. My sweetheart still has the exact same lesions and tangles in his brain as when he had his attack and we found out what the issue was. They never went away, they never got worse. He went from perfectly fine to not being able to feed himself or speak clearly or stand on his own or process normal brain function in a weeks time. It was scarey. Now the Nuero's say there is nothing more than can do. His brain has to heal on its own and he must learn to live with what he is left with as damage my not ever heal. It is difficult. He is emotional sometimes uncontrollably so. Lately he is difficult, cranky, I guess the old school word is cantankerous....He does not realize he is being difficult. And when he does he gets very upset with himself and say I'm not trying to be. Our situation differs in the way that he is retired and I am still in the workforce full time because of our age difference. It is never the less a constant burden and takes a huge amount of effort to make each day work. I am not one for "bickering" and lately we are doing alot of that. I have noticed his hearing has gotten tremendously worse in the past few weeks. I have encouraged him to see the dr. I don't know if it has Anything to do with the ADEM's but it just seems so sudden and increasingly diffferent than before. This past week and few days have been trying. I have stayed off here for a while as to not be the person always looking for encouragement..but as I have said in the past it is wonderful to have the support of persons dealing with similar situations or exact situations. Sometimes, just having someone listen. I have fought depression, didn't fight very well a while back, but am trying to do a much better job of it now. My hope is that one day I will have my Honey Bunny Back, and I believe that is one of the hardest things he deals with each day is that he is not the person he once was such a short time ago. Fatigue plays a huge roll in that with him. He wants to have the energy and do things, and it just isn't there most days. And if he forces himself, he just feels awful. THank you for listening today. Know that you have a new friend here in Lotus!!! I'm a proud southern woman, so I will just say Holler at me anytime!
Hi Lotus, thank you so much for sharing. i have read up your stories already and so feel for you. Our situations are very similar as I am also living now with a stranger. He is so fifferent and I know it frustrates him to no end. I can see his brain has been affected. In the past he was easy going and never short tempered. Now its like I dont know him anymore. He forgets things, sometimes screams at the kids for the most strangest of things. Gets irritated with me constantly, especially when I ask if I can get hime something to eat or anything, He has lost most of his appetite. Yes, we are both still working so I know he is very lucky compared to what many of the people on this group have been through. The Neurologist he is seeing does treat MS, and she keeps saying she is 100% sure its not MS, she has done 3 lumberpunches, blood tests, he has had 4 MRI's and 2 CT scans. So for now we just hope he does not have another bad relapse and can actually start recovering. For him at least the 1st lesions did clear, but then more came back and those are not gone yet. So we wait, hope and pray. Thank you so much for sharing your storey. I have send you a Friend request as well, would be great to vent to each other when we need to! LOL! :-) Thanks so much my new friend in Lotus! xxx Belinda
Point is that in severe cases everybody tries what is available hoping that this will help the situation. The IGIV gives people hopes but does not necessarily give any guaranties. As I mentioned, a good friend and customer of mine offered it to me for free but when we discussed it in depth we concluded that it could have been more beneficial in cases of MS.
Hope that yesterday's appointment with your doctor went well and that any unanswered issues were solved.
For the diagnoses, I lost faith: Initially I was diagnozed with ADEM, then a bit later while in Sweden I was diagnosed with MS, then later in Greece with ADEM and the latest from Israel was ADEM again!
So I keep on going till I have another relapse, then it will be surely MS!!!! But no matter what I came to terms with it.Shall keep on rolling till I drop, even though even in these cases unless the flair up is strong enough to send you to the wheel chair it does take a while before this happens!
Be as positive as you can be around your partner. The brain injury acts as an amplifier. So if I hear a milliliter of negativity it gets amplified into 1 trillion liters. That said, you are not a robot. Develop a support network in person or virtually on-line. The twist, when I hear positivity it not amplified. Sheesh!