Originally Posted by heb1212 (Post 981853)

Hi, again... You mentioned that you were receiving "platelet rich plasma". Did they run blood tests for all viruses that could possibly have been introduced via the blood therapy? Hep C, B and parvo virus b19? The virus I had shortly before my neuropathy started was parvo virus b19... though it is a very unusual manifestation of the virus. Usually, it's more extreme joint and muscle pain, though I have that, too. Yes, nerve, muscle and joint pain... I'm quite a mess. I mention it because it is a virus that can harbor in the bone marrow and does have something to do with blood platelets (though I'm not sure exactly what). I don't want to send you on a wild goose chase, but it is a thought. For a year my neuropathy was labeled "idiopathic" but I relentlessly brought up the parvo virus b19 and asked for retesting a year and a half later because I just had such a hard time accepting that the virus and the sudden onset of neuropathy couldn't be related. I also had severe gastrointestinal problems and sudden significant weight loss, so for a while a paraneoplastic syndrome was being considered and tested for.
I am taking gabapentin and have recently added 10 mg. nortriptyline... hate taking it all. It makes me feel like a zombie and really only takes the edge off the pain. But, otherwise, I'd be incapacitated and I need to participate in life still! Though, I've gone from a very positive, happy person... not without struggles, but certainly NOTHING like this... to just managing to "get through" the basic responsibilities that I have.
I'll be sure to check this site a little more often to get your updates and to share.

Originally Posted by SFNgirl (Post 981902)

Oh, and one more thing. Heb1212, I'm intrigued by the weight loss comment you made. I too have lost a lot of weight. And my doc just did a paraneoplastic panel which has been sent off to a specialty lab. He also ordered CT scans looking for malignancies, which were normal thankfully. He is also looking for rare autoimmune, which has been his theory all along, but steroid infusions did not help. I have had the postural light headedness for as long as I can remember, and he thinks that could have been a red flag, though others say could also be simply that im tall with low blood pressure...I haven't seen others mention weight loss though, and I'm not sure if it is the stress or the meds (that all warn of weight gain) or maybe some combo.

Originally Posted by Spectrum (Post 981935)

I've lost weight too, because I changed my diet as a result of not being able to exercise, or really to do any physical activity aside from walking without inflaming the SFN. But maybe that's something to look at too. My current doc thinks mine is rare autoimmune too, and that it somehow morphed into that and took on a life of its own after a toxic reaction to the platelet rich plasma injections and prolotherapy I was getting for some back problems. But the IV infusions haven't really helped me either.

Originally Posted by heb1212 (Post 982352)

Hi, SFN Friends... I have another question for y'all. I'm sitting here this morning with a vibrating sensation through my whole body. I have this pretty much all the time, even in my torso area. Do any of you get this? Also, any other odd paresthesias, crawling, tingling, in addition to the burning? Cold temps (air conditioning in the summer) provoke my nerve symptoms something awful. I can't even sit and watch my kids outdoor sports events because it's just too painful.
Thanks for your responses. Believe it or not, I went to bed the other night feeling just a BIT better knowing that I had connected with people who could sympathize in a way even the most compassionate of my friends and family can't... there's just no way to truly convey how difficult this is. After nearly two years of this, I have resigned myself to taking more medication. Spectrum, my doctors, too, felt it would "idiopathically" go away (ha, ha) as it had come on so fast... so, I thought every day thereafter was a day toward healing. The emotional rollercoaster of looking for improvement, never experiencing it... in fact, getting worse... has taken it's toll on me.
Proverbs 3:5-6 is my hope when all else seems hopeless.
"Trust in the Lord God with all your heart. Lean not on your own understanding. In all your ways, acknowledge Him, and He will make your path straight.
Do not be wise in your own eyes. Fear the Lord; shun evil. This WILL bring health to your body and nourishment to your bones.
Blessings...

Originally Posted by Spectrum (Post 982412)

I have all of those symptoms too. For me, heat is worse than cold. Direct sunlight from sitting outside or even driving aggravates the symptoms. It's absolutely crazy and unreal. So what do your doctors say now about your prognosis?

Originally Posted by SFNgirl (Post 982548)

Oh, and, the cold is a terrible trigger for me. I wear wool socks and slippers everyday, cannot even have my feet and ankles in the cold air, even inside at room temp. Air conditioning vents are horrible. I am actually much better in the heat. Do either of you get toe and finger discoloration? My toes periodically turn bright red, like a fiery stripe across top of foot. Sometimes more of foot too. And finger tips go from white, to deep purple. Lastly, no prognosis from my docs, just say they don't know since they don't know the underlying cause, but have led me to think it won't go away.