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Member
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Join Date: Apr 2012
Location: Upstate New York
Posts: 107
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Member
Join Date: Apr 2012
Location: Upstate New York
Posts: 107
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We sound so much alike...
... I really can't believe it. I contracted the virus in 5/12 and had a flu shot 10/12 and bam! Within five days the neuropathy started in my feet and quickly moved all over my body. I was tested for a year for everything under the sun while being assured I couldn't still have active virus, and then found out about a year ago that I have evidence of the virus lingering even now through a DNA positive blood test. So, my theory at least is that between the virus and the flu shot in relative close proximity the perfect storm hit me. I smiled when you said you don't like the word "idiopathic." I've said the same thing many times. Honestly, there's no such thing as idiopathic... just undiscovered yet. I'm a person who has always thrived on control and until this experience managed many things well, so at least one of the things the Lord is teaching me through this is to surrender completely. It's so hard. I feel like you do about expanding or changing the medicine I'm taking and I think it frustrates my doctors, but I've seen that the Cymbalta and Lyrica "work" until they "stop working" and you have to titrate up, increasing side effects, and that you can actually experience withdrawal symptoms while maintaining your current dosage. Thank you so very much for the link to your ministry. I will definitely check it out. I am grateful to have found you and a few others here who can identify with this strange, scary and painful condition, although of course I'm sorry that any of us found our ways here.
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Originally Posted by Liftyourhands7
Hi Cathy,
Thank you for your wonderful post it was an encouragement to me. To answer your question, yes I have been tested quite extensively for autoimmune diseases, I only had positive result for SCL70(scleraderma) however that was almost 4 years ago and I have been tested 3 more time for SCL70 and have had a negative result. My Rheumy told me he does not believe I have Scleraderma, so for the last few years I have been in search of what is going on with me...my symptoms started 2 years ago after a very bad cold, I also had a pertussis vaccine shortly after my cold virus, that's when everything started to happen, in a very short period of time I had numbness and burning that started in my feet then it progressed upward until my entire body was numb tingling and burning, I now suffer from not only that but palpitations (PVC's) and now this thing with my lungs  don't know if all of this is related or not, very frustrating. After I left the hospital yesterday I started to fell a little panicked, questions go through my mind like what is my future going to be...I said to my husband just this morning ,I'm starting to think I may one day be very disabled, he told me to try not to worry about that and just take one day at at time, and really that was such good advice and comes from a very reliable source, the word of God! I will continue to trust God with my future even though my body is screaming in pain because I know the Lord will never give me more than I can handle, the only time I really become depressed and panicked is when I take my eyes off of him, so my solution is to bring everyday to him, put my issues in his hands and then get support from others who know what I am going through like yourself.
Cathy I am a women's retreat speaker and my friend Linda and I have a ministry called Faith Multipiled ministries, if you can take a moment to go to our website, it is Faithmultiplied.com, click on the audio video at the top of the page and you can hear some clips of me speaking at a retreat. I also am a singer and there is an audio clip of me singing as well. I also wanted to encourage you in this journey we are on... God is faithful He will get us through this.
I am seeing a internal medicine Doctor in a couple of weeks, my neurologist told me there was really nothing else he could do for me and that I needed someone like an internal medicine Doctor to investigate these symptoms and try to find the culprit. I hate the word idiopathic, something has got to be causing all of this! Please pray for me and I will do the same for you. I did look up that virus that you had and I think your conclusions are right, that probably is what caused your SFN. Anyway, please let's keep in touch, maybe we will find some treatment that works for us, I like you am on Gabapentin and they have wanted me to switch over to cymbalta or Lyrica but I am so nervous about medications I am afraid to change  . One thing I did want to tell you is that I find chewing gum does help my BMS, have you tried that? Hope we can feel better soon. Blessings, Jan |
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