Help, what other methods are out there?!

My Mother is 50 and was diagnosed in June 2015, 3 weeks prior to this she fell ill with appendicitis, the doctors left her with appendicitis for 3 and a half days before removing, which was too late as her appendix had burst, then leaving her with staff infection and bed bound for 1-2weeks, slowly thinking she was returning to health, she started putting together odd sentences she would not normally say, and said we would take her to the doctors in the morning, that morning she wasn't any better and extremely tired, she had a shower before we were to take her to the hospital, and fainted.. doctors said to send her home as they didn't think this was anything serious, we refused to have her sent home as you could already see the facial features on her right side starting to droop in effect, and she could not walk or move. they agreed to keep her overnight, and first thing that morning they called and said they were flying her to Sydney (as we live in rural NSW) she got processivly worse and has been in hospital ever since, only about 2 months ago being transferred back to rural NSW closer to home, the treatment at this hospital is poor, she is slowing gaining movement back in her right side, arm being the slowest, she can only pinch her fingers together and her foot still drops so she needs a plinth to keep this upright, the hospital has now stated there is nothing they can do for her, gave her a wheelchair and said they were putting her in a home all without our knowledge (which is extremely poor doctoring as her mental state because of this is not great and she is now suffering depression) she was left in the hospital by herself told she was going to a nursing home and cannot be fixed, we rushed to her side to console her and give the doctors a talking to, but i was just wondering is anyone else in the similar situation with ADEM, what other methods can we do?

The beginning of your mom’s situation reminded.me so much of the beginning of my husband’s. We were at a local hospital and his care was terrible. They kept telling me he had viral meningitis and that I should feel lucky they were keeping him bc most treat at home. They even shamed me for asking if I should take him elsewhere saying no one would admit him. Well an mri later and he was transferred with adem. He was ventilated that day bc his paralysis crept up to his chest. I’m grateful he was intubated in Baltimore and not at our local hospital. It doesn’t sound like the hospital she’d at is very helpful. Have you spoken to a social worker at the hospital? What abut a rehab center that will help with physical, occupational and speech therapy rather than a nursing home? I’m so sorry your going through this with such little support from the hospital.

How did they treat her Adem? What medications?

In my case I started feeling pins and needles in my hands after a severe flu.

The pathologist I was refered to did not find something but I reached a point where I cound not lift a cup of coffee. Thought a hot bath would solve the problem but it didnt.

I was then refered to a neurologist who sent me for a brain MRI and a chest CT, plus lumbar puncture (ouch!). While perfoming the spinal tap they missed the spinal cord so they had to "drill" twice on the same day (ouch ouch).

Neurologist rushed to diagnoze MS and to prescrible five IVs of solumendrol plus injectable interferons.... Solumendrol ok but the rist did not sound very convincing so I managed to get admited to a Universtiy Medical Hospital some way out of bounds where they performed all sorts of tests including another spinal tap and all nice goodies including another MRI, a Pet scan a CT and you name it.

Finally Adem was diagnosed. It was much later while reading the reports that I saw "Adem even thought the lesions on the brain are not consistent with Adem", further investigation recommended.

I went through very hard times, I remember had to hold my right arm with my left one to shave in the morning, had to ask our house maid to put on my cufflinks.... Could not walk straight or for more than 50 meters. My nervous system was on fire...

Optical nerve was not much affected though I still have to wear dark sunglasses when in bright day light.

It faded out slowly without any moral support from anyone but my next of kin. My brain was like a soup, I had to type a contract several times due to mistakes to the extend that my assistant kindly asked me to leave it up to her as she could no longer stand my anger and frustration each and every time I made a mistake.

Now its been three years ever since and I am doing fine, dizziness has become a part of my life but otherwise I am "self propelled".... Definetely not the same by any means but fine.

Dont know what contributed to it, maybe luck, maybe the complete lack of support at home as my wife kept on pushing me to my limits (this could have had horrific results in another case, even leading to suicide)... Maybe my love for my 3 year old (then a new born) son.... Had to keep my head up so that I could provide and support.

Still having an mri once a year to check the system, the last one this month. Everything is dormant

If you are in a rural area it is hard. The closest hospital is a 20 minute flight away from where I live but.... Had it been worse I would have to move closer. Doctors are not always that sensitive or supportive and sometimes you have to improvise and keep strong. Point is you have to find the right doctor, in this case a neurologist. If not at reach like in my case find one who can take over from some way out, someone who will pick up the phone (dont overdo it!), someone who can give advise.

Wish you all the best and give it time and patience....

They performed multiple IV's, plasma exchange, they were testing her for so many things for quite some time as they were unsure, they had steriods for 6 days, on a high dosage, but now nothing, just anti depressants, and rehab...

Tara said:

How did they treat her Adem? What medications?

Thank you for this, she has also had a lumbar puncture earlier when she was first diagnosed, and now it is just rehabilitation, which they are saying she is not improving at a quick enough rate to keep her in a rehabilitation clinic, but every time i see her i see improvements. Did you have steroids at all? i have saw some people on here have had a long course of steroids over a 7 month period which they say helps? but I'm not sure weather it would help now, as she has been like this since June.
papageo said:

In my case I started feeling pins and needles in my hands after a severe flu.

The pathologist I was refered to did not find something but I reached a point where I cound not lift a cup of coffee. Thought a hot bath would solve the problem but it didnt.

I was then refered to a neurologist who sent me for a brain MRI and a chest CT, plus lumbar puncture (ouch!). While perfoming the spinal tap they missed the spinal cord so they had to "drill" twice on the same day (ouch ouch).

Neurologist rushed to diagnoze MS and to prescrible five IVs of solumendrol plus injectable interferons.... Solumendrol ok but the rist did not sound very convincing so I managed to get admited to a Universtiy Medical Hospital some way out of bounds where they performed all sorts of tests including another spinal tap and all nice goodies including another MRI, a Pet scan a CT and you name it.

Finally Adem was diagnosed. It was much later while reading the reports that I saw "Adem even thought the lesions on the brain are not consistent with Adem", further investigation recommended.

I went through very hard times, I remember had to hold my right arm with my left one to shave in the morning, had to ask our house maid to put on my cufflinks.... Could not walk straight or for more than 50 meters. My nervous system was on fire...

Optical nerve was not much affected though I still have to wear dark sunglasses when in bright day light.

It faded out slowly without any moral support from anyone but my next of kin. My brain was like a soup, I had to type a contract several times due to mistakes to the extend that my assistant kindly asked me to leave it up to her as she could no longer stand my anger and frustration each and every time I made a mistake.

Now its been three years ever since and I am doing fine, dizziness has become a part of my life but otherwise I am "self propelled".... Definetely not the same by any means but fine.

Dont know what contributed to it, maybe luck, maybe the complete lack of support at home as my wife kept on pushing me to my limits (this could have had horrific results in another case, even leading to suicide)... Maybe my love for my 3 year old (then a new born) son.... Had to keep my head up so that I could provide and support.

Still having an mri once a year to check the system, the last one this month. Everything is dormant

If you are in a rural area it is hard. The closest hospital is a 20 minute flight away from where I live but.... Had it been worse I would have to move closer. Doctors are not always that sensitive or supportive and sometimes you have to improvise and keep strong. Point is you have to find the right doctor, in this case a neurologist. If not at reach like in my case find one who can take over from some way out, someone who will pick up the phone (dont overdo it!), someone who can give advise.

Wish you all the best and give it time and patience....

I was administered iv s of solumendrol on three occasions doctors deemed it necessary to face what they considered a persistent relapse.

The progress could be very slow depending on the magnitude of the damage caused....

Stay as close to your mother as possible and encourage her to talk about improvements she feels, even little ones. It is important for her to share the joy of a progress with someone who shows interest and cares.

Pshychology and support play a vital role, something that I was deprived of.... What I feel now is bitterness towards those who did not help, love and affection for those very few who assisted. I come to tears when I think of my sister holding my hand to cross a busy street and have no feelings for those who thought they accomplished their mission by dumping me at the hospital door. As my next of kin live very far and did not want to to inconvenience them I chose to do the hospital trip and all the rest on my own....

Anyway keep your head up, it will pass. It will only remain as a bad memory.

Thank you for the support, and helpful insights, i hope you are recovering well, and may good health now follow.

papageo said:

I was administered iv s of solumendrol on three occasions doctors deemed it necessary to face what they considered a persistent relapse.

The progress could be very slow depending on the magnitude of the damage caused....

Stay as close to your mother as possible and encourage her to talk about improvements she feels, even little ones. It is important for her to share the joy of a progress with someone who shows interest and cares.

Pshychology and support play a vital role, something that I was deprived of.... What I feel now is bitterness towards those who did not help, love and affection for those very few who assisted. I come to tears when I think of my sister holding my hand to cross a busy street and have no feelings for those who thought they accomplished their mission by dumping me at the hospital door. As my next of kin live very far and did not want to to inconvenience them I chose to do the hospital trip and all the rest on my own....

Anyway keep your head up, it will pass. It will only remain as a bad memory.

The following links can be very helpful. My son has been diagnosed with severe ADEM. He is slowly improving. You can read my blog for more information. The following links can be very helpful and informative with regards to ADEM

https://www.youtube.com/watch?v=BlrUFOj57Lk

https://www.youtube.com/watch?v=gvbgeqJv-2Y

https://myelitis.org/living-with-myelitis/disease-information/