My story begins 10 ys ago whn was first missed diagnosed with epilepsy and then MS. It started abruptly one day when I would begin twitching when I stood up I would have to walk bent over to balance myself from falling. If I went in the sun or got over heated the symptoms would worsen, First I was given seizure medication which of course did'nt work, I was misdiagnosed with epilepsy. Then I went to a different neurologist he diagnosed MS and gave me medication which did seem to help a bit. Then my insurance changed I had to change neurologists this one said I did'nt have MS. I had fibromyalgia. He gve me yet a different perscription which of course did'nt work. Meanwhile my PCP gave me the medication that seemed to help. One day she sad are you still taking that? I said yes if I don't the twitching is worse. This going back and forth to Drs went on for 10 yrs. Somedays I could barley walk I culd never be out in the heat or enjoy the sun. My vitamin D levels were extremely low and by now i was taking a perscription for that. The week of Christmas 2013 I slept all day long, all night long just exhausted, I could'nt stand I could'nt stop twitching I had lost muscle control I was so very weak. On Dec 27 2013 I collapsed after days of my husband begging me to go to the hospital and me refusing because I did'nt want to ruin the holidays I knew I had to get to a hospital fast. They did every test possible and could not find out what was wrong they knew it was not MS I was having severe otrthostatic hypotension, autonomic dysfunction, sjpgrens syndrome Immune mediated dysautonomia. After 2 weeks in the hospital and them not being able to get it uncer control I was high risk critiacal they had me transported to the University of Chicago. There did more testing and finally found out why I was so sick, I have paraneoplastic neurologic Syndrome. I soent another week there then finally got to go home and had to have physical therapy as well as a lot of medication. Paraneoplastic is a very rare dibilating disease. It is the consequence of the presence of cancer in the body but unlike a mass effect is not due to the local presence of cancer cells.People who have had cancer, have cancer now or are going to have cancer in the near future someimes they never find the cancer .My immune system is attacking my nervous system and will continue to do so becauuse it cannot find the cancer to attack therefore I have a lot of nerve damage that will never go away. The longer the immune system attacks the more nerve damage. Most days are exhausting for me, I'm in a lot of pain, I have bowel problems, sleep disturbances, depression, anxiety, dry skin mouth and eyes, vision problems hearing problems balance problems headaches, shortness of breath, and memory loss. There is no cure for this disease. I belong to a group started by Debbie Barnum called PCD/PNS where I have learned more from these people then my Drs. A man whose wife is also very ill Sudjar Wahjudi has done so much research is the most informative about this disease. We now have 159 members patients as well as care givers. My husband brother and sister in law have joined also to support me. When you have paraneoplastic you feel very isolated. Theyre is treatment but many Drs don't know about it, they don't know about this disease I was told at one point there is'nt a Dr. in this area that will take you as a patient they don't know enough about it. There are also 2 other groups Fight Paraneoplastic and Rare Connect Group. We suffer silently nd it is a horrbile disease. I knew I was dying in Dec. I could actually feel life slipping away from me. I am grateful to all the Drs and nurses , So very grateful. But I have also never felt more alone because of this being a rare disease nobody understands what this is like. I'm not the same person I was before I'm very slow, I cannot do the things I used to do I can't remember things I had so many symptoms but the Dr always disregarded, it was either arthritis a sinus infection or you're getting older. My body always feels exhausted I have tremors. and I look at life a lot differently now. I smell the roses every chance I get when I'm in pain I still smile because I can stand up and walk I can't be in the sun but I can see it, and when I pray I pray for everybody who has this and for those who don't taht they never get it. I pray for a cure I pray that the people who walked away from me during my illness will know that I forgive them and still love them. And I thank God . I hope that you will take my story and put it out for people to learn about Paraneoplastic if not my story then someone else who has it. Please we need to get the word out please check out PCD/PNS private group. Ask for Debbie Barnum or Sudjar Wahjudi I'm just still learning about this disease I have everyday a new symptoms but they have been atit for some time now and are very informative. Thank for this opportunity to tell my story there is so much more I can add but I'm very tired.
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