tpapik Posted February 21, 2013 Report Share Posted February 21, 2013 I went to the neuro muscular doctor for the first time at the cleveland clinic for an abnormal Qsart test . and now have a skin biopsy and thermoregulatory sweat test scheduled for march (ooooh the wait) :-( . So question to those who have had a Positive Qsart test or really a Positive skin biopsy. Can small fiber neuropathy - be fatal? meaning can the underlying cause of the small fiber neuropathy be fatal . So far all the B vitamins were WNL , and my vitamin D was just slightly low. I always have Normal CBC BMP, just tachycardia with some GI issues. (always hungry OR always nauseated) . very sensitive to Adhesive and Latex. Dr. doesnt want to do an EMG . so far Positive sweat test, Positive Qsart negetive Valvsoler (sp) and moderate pooling into the lower legs. Fatigue to the extreme and high heart rate.anyn suggestions? I just want to know that I am not going to die :-( I feel like I have had enough testingNegetive COlonoscopy, EGD- showed Gastritis, negetive upper abdominal ultrasound, negetive MRI brain, Normal HIDA scan. Normal EKG's with random PVS's sometimes other than tachycardia.I am going to call to see if cardiorehab is available for me if so will start that. (if insurance covers it, at the cleveland clinic) I am just being a hypochondriac and dont want to die at 26 or even 30 Quote Link to comment Share on other sites More sharing options...
tpapik Posted February 21, 2013 Author Report Share Posted February 21, 2013 thyroid levels are normal despite a thyroid nodule that was found- which biopsy was negetive. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 21, 2013 Report Share Posted February 21, 2013 Breath!! From everything you've said there is no reason to think this is life threatening. I'm in my 50's and have had small fiber neuropathy as a result of a combination of immune, autoimmune and gene defects, probably was born with most of it. I'm not concerned even with all that I would die from this.I don't know anyone that has died from Small fiber neuropathy or dysautonomia in and of itself. Allowing yourself to get distraught over this will not help your symptoms and may make them worse. You are on the right course for diagnostics, so try to find some comfort in that.Maybe try to find some things you enjoy to distract yourself until you get through the diagnostic process. If it makes you feel any better, you are finding things out much faster then many of us on here. It took decades for them to figure out what was wrong with me.Take care! Quote Link to comment Share on other sites More sharing options...
tpapik Posted February 21, 2013 Author Report Share Posted February 21, 2013 Thanks for the stern encouragement! No joke , I need it. THis is what happened to me in my diagnosis which led to a quick diagnosis and and testing . I was pregnant , had a premature birth, my baby girl lived to be a week, died a week later, 2 weeks after that I wind up in the hospital with tachycardia shortness of breath, lightheadedness nd back in the hospital for total of a month (if you count when i was in still pregnant trying to hold my baby in) . tilt table done at the hospital (a hospital that is close to the Cleveland Clinic) was tested when admitted for adrenal problems, thyroid biopsy for the nodule, and MRI head, CT angiogram, blah blah and finally discharged- I think I was diagnosed easy because I live close to the cleveland clinic with doctors who are close to their studies. Some how got in to see Dr. Jaeger quickly . who did the Sqart, stress echo, vasvular (sp) , blood volume, in about a month or so spand. who then send me to a neuromuscular doc right after the abnormal Sqart. I know I should be lucky for sure...... I just feel like im degrading instead of improving! It went from just tachycardia , to achyness, pinpoint prick feelings, fatigue, nausea AND a worsening tachy cardia, (probably because im being so darn stressed about it)Good news is monday im going to counseling- which is an obvious need because I feel like I havent even been able to mourn the death of Nora. & thru pregnancy and this im a HUGE hypochondriac (if we haven't noticed) and trust me I ADMIT IT! now its just - - - getting over that and trusting in my God.... who holds my strength. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 21, 2013 Report Share Posted February 21, 2013 I'm so glad to hear you've got counciling scheduled. It is no wonder you are fearful of dying having just lost your daughter. Sorry, I had forgotten that. Having lost my pregnancy at 7 wks and then never getting pregnant again. I understand that loss and what it does to ones heart and sole.My church offered a greaving program for women who lost their babies. It lasted 3 months, I was with others who also had lost babies, we got through it and had a beautiful ceremony to honor their short lives. It helped immensly.While you do need to pursue a diagnosis, it is also serving as a distraction to a very large hole in your heart. Maybe a needed one. The only way to get through a loss like this is to go through it, there are no short cuts. One day you will be on the other side of the worst of it, though it is always there in the background. You do go on.The silver lining to my miscarriage was that it was the start of the medical community figuring out why I was so ill. So I'm grateful to my baby, that helped me. It took another 7 years before we figured it all out and with my treatment plan I feel like I'm holding my own.I know I will meet mine again some day. It is good to allow yourself to rest in god's loving hands. Be kind to yourself. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 21, 2013 Report Share Posted February 21, 2013 Small fiber neuropathy itself is not deadly. If you have lupus then maybe but usually its idiopathic and associated with pots. Used to suggest the patient has neuropathic pots. Quote Link to comment Share on other sites More sharing options...
tpapik Posted February 21, 2013 Author Report Share Posted February 21, 2013 I suppose I wouldn't say Lupus is deadly... I have a very strong amazing coworker thats 26 living it GREAT with lupus. Though I do know the understandings of its complications. but shes a wonderful person and a wonderful Nurse. , she just has to take extra special precautions when caring for certain patients. Quote Link to comment Share on other sites More sharing options...
tpapik Posted February 21, 2013 Author Report Share Posted February 21, 2013 and yes voluteer (sorry dont know your name) we will see our babies in heaven! Healthy, not sick , no tears, no fear , no pain, and I will grab her with open arms Quote Link to comment Share on other sites More sharing options...
arizona girl Posted February 21, 2013 Report Share Posted February 21, 2013 Oh, also I would not ever say that you are a hypochondriac. Not even close. So be kind and don't do that to yourself. You've been through enough. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 21, 2013 Report Share Posted February 21, 2013 I suppose I wouldn't say Lupus is deadly... I have a very strong amazing coworker thats 26 living it GREAT with lupus. Though I do know the understandings of its complications. but shes a wonderful person and a wonderful Nurse. , she just has to take extra special precautions when caring for certain patients.Sorry yes very true - just saying that it can have complications that are serious. But most cases of small fibre neuropathy are considered relatively benign. Some docs arent even certain yet that its a causitive factor in POTS, but rather just an associated manifestation. Quote Link to comment Share on other sites More sharing options...
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