My life with GBS-CIDP
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I myself fell ill with the syndrome in July 2015, and it all started with a lapidary cold. Who didn't want to pass. Shortly after that I got pneumonia, so my ordeal began.
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An odyssey of doctors and examinations began. I felt constantly weak and powerless. I then developed leukocytosis. Couldn't explain it because there was nothing to be seen in the blood apart from the leukocytosis.
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Soon after, the muscle pain and cramps in my legs started. Discomfort in the toes and legs.
it went like this for a while until this cursed Saturday evening came while driving the car I noticed that I had almost no feeling in the right leg.
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The next day I got up and felt like a truck had run over me, just powerless and knocked out.
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In the evening I said to my panter please take me to the hospital I don't feel so well said and done.
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When the doctors examined me in the emergency room, they could not trigger any reflexes in the lower extremities, so they admitted me to the hospital for further tests. The next morning, the electrocardiography took place immediately and it confirmed what the doctors suspected all measurements were delayed or could not be triggered at all.
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A lumbar puncture was performed on the same day. The tests of this LP confirmed the suspicion of GBS what the doctors already suspected for me and my family a world collapsed because we had already gone through it 15 years ago with my father actually unimaginable since the disease is so rare and that it is the same 2 strikes in the same family was actually incomprehensible to the doctors.
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Assuming that each 100,000. patient in Germany is affected.
Did we hit the jackpot?
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The therapies started immediately after the LP DH. Immunoglobin infusions.
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Unfortunately these didn't work the way they were supposed to for the three days that followed I couldn't walk and was confined to a wheelchair when the infusion therapy ended I was discharged and waited for my rehab place in Enzen's Berg Hopfen am See.
But there were still 2 weeks to go and I still felt broken and knocked out. My partner and family took very good care of me during this time.
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Then came the day of departure to the rehabilitation clinic. And I felt weaker and weaker. When the chief physician of the clinic examined me, it was immediately decided to transfer me back to the clinic. Since I now not only had an incomplete spinal cord injury, but a tetraparesis, ie a paralysis of all 4 extremities with swallowing paralysis and trunk instability.
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So that one day later I was transferred back to the acute hospital. After initial difficulties with the doctors treating me there, who were of the opinion that I was out of therapy, I got plasmapheresis for blood washing because my condition didn't improve.
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I got Pysio and Ergo and Logo during the whole 6 weeks in the hospital until a rehab place with care class D became available.
In Ichenhausen. There I met a special person who was a great help to me there and supported me and my partner in all matters.
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the Friendship lasts to this day Our Mario Möst that's the young man on my cover photo.
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on FB My life with Guillian Barre Syndrome.
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I was there for the next quarter of a year, but there was no improvement. So I and my panter decided that I should come home.
Pysio and Ergo continued to be done there twice a week. In April 2016, after almost a year since the onset of the disease, improvements finally set in. I was able to walk a few steps. That was a success for me and my partner. There were tears and more months of deprivation.
Unfortunately, it's still not perfect because I probably suffer from the chronic variant CIDP. A hospital stay with further diagnostics is planned soon.
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Today it is clear that I suffer from CIDP.
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In conclusion, I can only say that with this disease GBS The background and family ties play a very important role in recovery. Since the sick person has to be mentally supported again and again.
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Since the CIDP diagnosis, I've been receiving Imunoglobolin IV every 4 weeks. An attempt will soon be made to switch to subcutaneous administration.
That will be a relief for me because I will then be a bit more free. And not always for the infusion in the clinic or in the hospital.
have to go to a practice.
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But this can infuse me at home.
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Since I am affected myself, I try to help patients who are affected through my work and my social media pages. As I know
how severely the disease affects our lives.
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Since March 2022 I have been on the national board of the German GBS-CIDP Self-Help Ev
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That makes me very proud.
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At the federal level to support people with Guillian Barre Syndrome and Chronic Inflammatory Demyelinating
Polradiculoneuropathy and its subtypes.
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If you have any questions, please feel free to send me a message.
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It salutes you
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Sebastiano Sambasile
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