My story...... how did I get here

I am a 42 yr old from Montana. In November of 2015, I started having numbness in my right buttock, ignored it, and in a few days later I woke up to get ready for work and my right leg was feeling numb. Went to work anyway, I worked as a home health and hospice nurse, I had to admit a new patient went to the home and it took everything I had to get inside. Started to do the exam and my legs were burning the whole time. I attempted to get up and leave and could barely move. I basically crawled to my car and drove myself to the ER, I collapsed in the ER, as both legs were then numb and at that time I was unable to urinate. The PA in the ER did labs and an MRI, said she could not find anything physically wrong with me. She felt it was stress and to go home and rest, if I couldn’t continue to urinate to come back. Well within 12 hours I was back on the ER and having shortness of breath, could not walk and could still not pee. A hospitalist came in said he read my profile from earlier and said I had Guillain Barre. Anyway received IVIG after a positive lumbar puncture and I also had meningitis as well. Did inpatient rehabilitation in a town 2 hours away, for about a month…was home for 2 days and relapsed, back to the ICU I go. They said it was just a fluke that I will make a good recovery. Then it happened again, my worse bout yet at the end of February. I was in the hospital and rehabilitation again for 7 weeks. I am now diagnosed with CIDP. I go for monthly IVIG infusion. Waiting to try to get into Mayo but it has been a hassle. I am uncertain about my future, I am sad and pissed, and having a difficult time trying to wrap my head around all of this

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Amazing how many people in the hospitals tell patients that it's just a fluke. I guess that they are use to so many people faking symptoms. You have had a rough time for sure. The sad and pissed part is very understood. Hope you get some real treatment soon.

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Thank you.

Hello Ahiatt, we can relate. Our 5 year old son has had a similar journey: First diagnosed with GBS, then had a relape, another and another. Finally diagnosed with CIDP. Before this happened we had never heard of either GBS or CIDP. I hope there is a light at the end of the tunnel. By the way I used to live in Northwest Montana from 1994-1999. My husband and I have been very depressed about our son of course. This all started happening for us in late January of this year. We are grieving. I am glad to find a place like this that reminds you ‘We are not alone’. I really look forward to reading more from you as the days go by and I sincerely hope you are doing well. Yours truly, Glinda

I am so sorry that you are having to go through this with your son. My son had Duchesne Muscular Dystrophy and passed away last March, he was 17. Praying that your son’s neurologist will get him on a good treatment pattern and he can just be a little boy with just a few bumps now and then. I will pray for you, your husband and your son. I hope that their is light at the end of the tunnel coming your way. HUGS

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