My life, my journey, my legacy

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Primary illness chronic intestinal pseudo obstruction, gastroparesis (CIPO) and reflux. Began December 2007.

Years of ups and downs, in and out of hospitals. Then suddenly... I 

Got sick fast August 2014,  with symptoms of Guillian Barrés paralysed neck down for approximately 7 w Since December 2007.

Received plasmapheresis and immunoglobulin treatments under my 7 months stay in the hospital. Discharged March 2015.

Final diagnosis came up as Polyneuropathy type AMSAN.

Symptoms include loss of sensation, and motoric skills. Neck down. Spasms in feet and hands. Dystoni; wearing clothes hurts, touching as well:-((. Burning sensation hands and feet.

No control over bowel movements and bladder. And ataxia when tired. Amongst others.

 

Like with GBS my nerves are toast but since the same is the case for the myelin sheath around the nerves my damages are permanent.

And my neurologist does not have great faith in any further recovery. 

 

I am bound to a wheelchair but at least now I am home.

 

I'm going to need rehabilitation treatments for the rest of my life if I want to keep the bodily functions I have left.

 

I hope that being in this group can help me with ideas about treatments, supplements and way of life with this horrendous disease.

 

I am extremely stubborn:-))

 

Normally when you get GBS your nerves are affected.

Causing paralysis.

My illness started out as an acute state of GBS but lumbal puncture, all kinds of scans, biopsy and blod work turned out in 'favor of' polyneuropathysensational  type AMSAN, meaning Acute motoric axonal neuropathy, no reflexes, no autonome movements, no sensation, nor warm neither cold, dystonia and due to my chronic intestinal pseudo obstruction, stomach pain on about 8-9 on the 10 scale 24/7/365.

 

In my case it is unfortunately so that the myelin sheath around the nerves along with the nerves are totally toast.

Normally GBS can get 'back to normal' within a year from the initial illness. But in my case prognosis are a little dimmer:-/

 

This results in my lack of sensation neck down, all my motoric skills are gone, I have think through every movement from holding the phone, to moving my finger from letter to letter.

 

It's a battle every day and every time I move myself from the bed to my wheelchair, it hurts like hell. But as I said, I am extremely stubborn so I fight on.

 

I know for a fact that new nerves can grow out, it normally takes between 10 to 15 years but in my book that equals a maybe.

 

I got the intestinal pseudo obstruction in 2007 also known as false bowel obstruction resulting in pain as if my bowels were obstructed. It's a neuropathy in the whole digestive system.

This disease is most likely the cause of insuffiens in vitamin B-and D. 

 

I live in Malmö, Sweden and here they were baffled with my symptoms and the findings of the EMG and ENG and the biopsy taken from a nerve in my left foot.

The lumbal puncture and some of the scan indicated that my spine/bone marrow was affected, but that was not a recent as the rest of the symptoms. For instance I have no reflexes at all:-((

 

But I have come a long way, now I can move without the lift, and I can maneuver the wheelchair around myself.

 

I have a manual wheelchair inside the house and an electrical wheelchair for the outside.

 

if you have any questions feel free to ask. I will get in touch as soon as health and fingers are cooperating:-)
Best wishes from Sweden