Thanks for the help here is more of my story

First I thought I needed a new post because the other is so long, second thank you for all the advice and help, it felt good not to be treated crazy.

OK like I said just got diagnosed with CIDP and am having to wait 3 months for the EMG, but this is how we got here. I have APS which is antiphospholipid antibody syndrome. Its a blood clotting disease in the lupus family. No to lupus yes to thclotting thing. Have had it for 13 years. Have had multi TIA and small strokes. 6 years ago I shattered. My leg required rods and scrwes, because of the autoimmune thing it did not heal well multi surgeries etc. Had the rod taken out last year and they damaged the peorneal nerve. Not kidding it took 3 months to get someone to listen to me that there was a prob, at last a neuro surg looked and noted the nerve was compressed to the point of being damaged, he decompresed it and I got movement back but was left with lots of nerve pain. Called it chronic regional nerve pain syndrome.

This year I have fallen a few times but we thought it was because I have a hard time feeling the outside of my foot. In one fall I tore stuff in my knee so had a scope. Yeah my luck it got infected. Small town doc did not treat an immunocompromised pt right and it got very infected, I got septic and 4 weeks ago spent 2 weeks in TCU and ICU. I developed a strange headache called Press and was treated with steroids. I loved it, the best I have felt in 2 years. Pain was better, balance better, I just felt better.

Three days later I went home. The first night home I started cramping in my arms and legs. The arms were so bad I was crying. Remember I broke my leg and held it for 1 hour waiting for ems so for me to cry the pain was unreal. My PCP said it was more of the chronic pain syndrome, just moved up to my arms, but I knew this was different so we went to the ER where I was treated like ****. Like drug seeking, but I kept telling them it was the muscles cramping. I was sent home where for 5 days I could not move my arms it hurt so bad. I knew my PCP was set on the pain syndrome so I pulled a string and saw the neuro surf that put my leg back. He listened to me and said he felt pretty sure I had the CIDP, he moved my arms asked lots of questions and said he felt sure of this diagnosis and referred me for the EMG. I can't have a LP because of the clotting problem, so I have to have the EMG. He felt so strong with the response I had to the steroids that he felt I should start treatment even if the EMG was inconclusive.

Problem is the 3 month wait for the test. My arms are better since they started me on balcelofen, but the CIDP just fit so well with every strange symptom I have had. The balance, the fatigue, the strange muscle pain weakness. It just fits. I live in southern Indiana near Louisville my, and all my medical is in Louisville, but the wait for anything here takes moths. I don't mind to travel if I can get my diagnosis faster. I had to go to Atlanta for the clotting diagnosis. I just can't help but think if it is CIDP its like the nerve problem in my leg that got worse the longer it took me to get help.

I am young, and have a 13 year old son who needs a mom to go to baseball games, and throw footballs with him, not waste away in a bed because it hurts to move. If I need to go to Vandy,or Cleveland, or New York then that is what I will do. I trust my neuro surg, he is why I can move my leg, and he feels strong on this, but he can't get me seen any faster. I have pulled a lot of strings the past 2 days, but so far it has not sped up the months wait time. I am not sure how much harder to push. So this is my story. Thanks.

Put Mayo Clinic in Rochester, Mn. on your list. My neuro in Chicago was stumped, I was totally paralyzed, and being told I was dying from ALS. I asked him about going to Mayo for a 2nd opinion. He smiled and said “that’s what I’d do”. He and the staff at Rush made all the arrangements with my insurance ( was on Cobra at the time), and did all the pre-admission stuff for Mayo. They put in a catheter so I could make the 5 hr. trip and family hauled me up there. Began plasma phereses even before all their testing was done because they know CIDP. Stayed 18 days and went back to Rush to continue the treatment plan.
Try to contact Dr.Lyell Jones in the neurology dept at Mayo.The first time I met him, he said “You are going to walk into my office one year from now” and he was right. Pretty amazing to hear that when the only thing you can move is your head.