When It began

My CIDP Story

The Beginning of my CIDP Journey

This is a hard one to say when my CIDP all began. Looking back for many years before diagnosis I had small symptoms that I thought of at the time as blips in my health.

My 1st Pregnancy

The real big moment of realisation that something definitely was not right was when I was pregnant with my first child. Only a few months into the pregnancy I started having symptoms in my hands of weakness and of them just not feeling right to me. I also had heavy, tight legs which felt so swollen as if they would pop, although they were not swollen at all. I started to lose my balance and my legs would give way underneath me as if they had turned to jelly and I would be on the floor, which I found embarrassing in the middle of the street. Funnily enough people were not quick to come and help either, they looked the other way, im sure they presumed I was drunk and pregnant!

I went to see my GP when I was about 5 months pregnant who told me all my symptoms were because of water retention and gave me tablets for this. I was so infuriated that he was not listening to me. He saw me as pregnant and was not listening to the symptoms. As he passed me the prescription I burst into tears through sheer frustration. He turned and looked at me and said “why are you crying, it’s not like you have cancer!” I left the surgery and never took the tablets. I continued to be vocal at anti natal classes saying that i knew something wasnt right. I was referred to the hospital and examined and told it was probably carpel tunnel syndrome and given splints for my wrists. They couldn’t understand why my gait had changed and once again it was put down to pregnancy.

My symptoms were now escalating, I could no longer sit on the floor and get up off the floor without help, my muscles were so weak, it was as if i had just managed a marathon the day before and my body was worn out, again nothing to do with being pregnant, I was still very small in size. It was eventually when I saw my consultant obstetrician at the clinic and I told him that something was not right and it wasnt pregnancy related, he listened, he agreed. Finally! He inserted a needle into my legs, starting at my feet, going up my ankles asking me if I could feel it. I could not. He then checked my reflexes. I had none. He instantly sent a referral to a neurologist and I finally felt that someone was listening and taking me seriously.

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