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Member
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Join Date: Sep 2013
Location: Georgia
Posts: 905
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Member
Join Date: Sep 2013
Location: Georgia
Posts: 905
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Canagirl
Quote: emailed my Dr asking him for more info and he told me to meet him at his office. Here is the info I got
Left distal leg abnormal less than 9 my number was 7.27
Left thigh abnormal less than 8.3 my number is 8
It said no evidence of vasculitus or other histological abnormalities and no amyloid is detected.
There was no mention of condition of nerve fibers
4 1/2 months after my sudden onset I was in my foot and ankle dr's office for results.....I cried as he explained them.....cried from relief that I had a dx. All dr's said it was neuropathy but I really needed a solid dx. People react differently to their own dx's as I've discovered here at NT.
He used Bako Labs for my test and I haven't seen anyone else on here that used Bako. Their results are from 0 to 15.....15 being the best. Both punches were above my right ankle (my good foot) and they were 0.0 and 0.06. Really can't get any lower than that. The report explained that I had no A and C fibers left in my feet and the dx was Severe Small Fiber Neuropathy.
During the next year I had 3 doctors tell me to see pain mgmt. but I just couldn't bring myself to do it. I had the 'pill mill' thing in my head. My PCP had me on 100 mg 3 x's daily to begin with. After I started going to a neuro he titrated me up to 2700 mgs a day but I could not take due to hallucinations. 1800 mg a day wound up being the dosage for me. I know it works because I had to come off of it to start Lyrica (which gave me a horrible stomach ache) and was off of it for 6 weeks. I could not wait to get back on it. It only provides some relief but we'll take anything that helps. I also could not take Cymbalta because of hallucinations even at 60 mg.
Finally after 17 months of agony I made an appointment with a pain mgmt. dr. I picked him off the internet and was lucky enough to hit the jackpot the first round. We discussed all my symptoms and types of pain I was having. He put me on BuTrans pain patch at 5 mcg/hr and I have now titrated up to 20 mcg/hr and that is as high as he will go. He also gives me Percocet 10-325 up to 3 a day for breakthrough pain but it's actually part of my pain mgmt. since I have to take 1 to 3 everyday.
Short history is: Had burning in feet after work most nights but it was gone the next morning. Never gave it much thought. I was considered pre-diabetic and was on metformin for that. Got laid off after 26 years at my job, had a hysterectomy a month later and path report came back uterine cancer. A rare type called Papillary Serous. Since I had a total hysterectomy they felt it was probably all gone because it had not broken thru uterine wall but recommended 6 rounds of chemo due to aggressiveness of this type of cancer. One month after chemo ended (March 2013) my feet hurt so bad I couldn't walk and that is how my journey began.
And on it goes. Along with my meds I have to take 40 mg of Paxil a day. I was just a crying mess for so long. I was 50 when this started and just turned 53. I still have/had quite a lot of life and work left to do. The work part is gone now but not the life part. It's still evolving as the SFN does. I've had every symptom you can mention. My twitches hit me so hard that if I'm laying down and it hits my back it actually shakes/lurches my body forward.
It is better than when I started and as long as I don't walk/stand/drive/cook etc I do ok. I stop and go all day long and the go isn't much. I'm at home 99% of the time. I do drive when absolutely necessary but the vibration of the car floor boards and steering wheel sets my hands and feet off immediately.
As Susanne C said we are much alike in how this has affected us. I strongly urge you to get into pain mgmt. ASAP and not wait like I did. My dr says the only thing he thinks will really give me some good quality of life is a SCS. That freaks me out so it's off the table for now.
Panic and stress will always make the pain and symptoms worse. For everyone. That's the reason I'm on Paxil and it helps a lot.
There is life after SFN you just have to find your way to live it. You need to find a way to calm yourself and staying off the internet for awhile may help you.
I know this was a long post but I hope something I've said may help you. It was worth a shot 
Debi from Georgia
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