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Newly Diagnosed

iOneDar Message
9 Feb 2013, 02:50 PM

After a year of more tests and specialists than I care to recall and being told everything from I'm that strangest case ever to it's all in my head, I finally have a diagnosis. I would love to hear about the experiences of others with a disease I never heard of until a couple of days ago.
bbrooks Message
9 Feb 2013, 09:25 PM

Hi! I was diagnosed with Lewis-Sumner Syndrome about 4 years ago. I'm sorry to hear that you have this disease, but glad that you have a diagnosis. It took 18 months for me to get a diagnosis; my symptoms are not symmetric, which made it difficult for anybody to figure out what was going on. But I have been getting IV Ig treatment regularly and have responded very well. The GBS CIDP foundation is an excellent information resource. And I would be happy to talk with you (or email). Wishing you the very best. Beth NJ
iOneDar Message
9 Feb 2013, 10:55 PM

Hi Beth Thanks so much for writing. It is encouraging to hear from someone who understands the unique path that I'm on, but I'm sorry you have this disease as well. As far as I can tell, my symptoms are symmetrical. It all began very quickly and has steadily declined. At first, it was mainly the sensory (pain, numbness, tingling) and the weakness was not as obvious. I discovered early last summer that the reason for the shortness of breath I'd been experiencing was because my right hemidiaphragm is paralyzed. I am awaiting insurance approval for IVIg treatment. The initial plan is for me to have it over two days for three months in a row and then re-evaluate. I glad to hear it has gone well for you - the horror stories on the internet have made me feel a bit apprehensive. I noticed you're from NJ. My wife and I grew up in NJ. After living for a season in VA and MO, we settled in PA 17 years ago with our four children. I'd love to connect further with you by phone or email. Thanks again for your response. It's good to know someone else "out there" is dealing with this. The "very rare" status of this disease/condition seems so isolating. My best to you, Don Lancaster County PA
chaplainpat Message
13 Feb 2013, 04:37 PM

My story -- In May 2008 two fingers on my left hand got tingly and slowly this condition increased until my entire left hand was affected. Then it jumped over to my right hand and soon both hands caused me great concern. I saw 11 different doctors that year and no one knew whar was wrong with me. MS and carpal tunnel syndrome were suggested. I finally got a new general doctor and after a full physical he sent me to a new neurologist at MSU. I had no hope for a positive outcome. After all, I had already seen 3 neurologists. Imagine my joy when I exited that appointment with a diagnosis of LSS and started treatment in four days. She was not the doc that my general physician had referred me to - - but a substutition by the clinic. Coincidence?? I see her as an aswer to prayer and found her to be an answer to myprayers and an absolute angel! You see, my new physician had studied unde Lewis Sumner at Wayne State in Detroit!! I had or 4 days a month and took Cellcept beginning at 500 mg and
iOneDar Message
17 Feb 2013, 12:40 PM

Chaplainpat, Thanks for sharing your story. Have you experienced improvement since you started your treatments? What has it been like to have LSS since 2008? Looking forward to learning more.