Thank you kindly MrsD for your knowledgeable and extensive reply!
I do have details on much of what you addressed. Will try to respond as succinctly as possible, but will still need to have some detail...
B12 levels? A little over 500 on last test...so within range. Subsequently I took a short course of methylcobalamin shots which 'may' have helped when taking 1000 MG daily for about a week. MD didn't want to prescribe more than once per month after that, following published guidelines I suppose? Currently not taking any. NOTE: When I've atttemped pill/sub-lingual form in the past, I've always had to stop within days since I will tingle all over badly which did NOT happen with the injected methylcobolamin!
Never tested mag, but may do so very soon. Cannot overstress, when I take it, within days, widespread twitching, which really doesn't bother me other than eyelids. I've taken gabapentin for almost 4 years and have just read that it CAN deplete magnesium
Have you heard this? If so, this could be an issue? Have made note of the forms suggested, thanks
I have taken benfotiamine at times, again did not not sustain the therapy. Again, I'll probably test this soon as well. Do hope the serum/whole blood test for these vitamins/minerals are generally accurate?
I tested D3 in 2010 on my own initiative. When I supplemented with D3, it seemed to make symptoms worse. Also experienced greater insomnia, which also makes all of the sensory problems heighten. I may have this tested again in my new workup. Very frustrating that I'm not able to tolerate these supplements that are beneficial for my symptoms
Even though I may just have to try and push through to get them into my system? What do you suggest with the apparent lack of tolerance ? Smaller doses? I am somewhat embarrassed I've not faithfully taken the supplements as so many others here seem to adhere to
Good points about 'normal' glucose levels. I've only ever had 'fasting' levels tested, always between 82 and 97. I do have relatives with Type 2D but I show NO other symptoms. But you're right, I've read of PN being a 'presenting' symptom. A close family member with T2D for about 20 years is just finally having 'minor' PN symptoms in their feet - so my presentation is far different than theirs! Perhaps the hBA1c is warranted?
Thankfully I did NOT take any of the antibiotics you listed. I can remember taking IV Rocephin, biaxin, doxycycline. Doxy also seemed to intensify the burning tingling while ON it. Again, the burning of back skin/rear legs became chronic AFTER the antibiotics - maybe related or coincidental, I have no idea?
No recent vaccines.
I have been exposed to some questionable chemicals (plastic/acrylic gasses) sporadically in my work and even less occassionally while gardening - this is always something in the back of my mind. Problem is, exposure was 5-12 years ago, what would I do now to assess damage/dysfunction beyond what I've tested? Mentioned this to neuros, they have no suggestions. Any ideas? By the way, this would NEVER be worker's comp issue since I am self-employed. So no blaming anyone, just want to help my symptoms
How accurrate are these skin-punch biopsies in surveying SFN? Based on my strictly sensory symptoms, the doctors and myself really thought this was my diagnosis until the negative test. Would a re-test be suggested? By the way, the sample was taken from the back of my right calf (as directed by the instructions), yet this is an area that rarely burns? The lab suggested one of three test sites, have to wonder if another one of their suggested test sites would make sense? Is a sample EVER taken from the sole?
I need to give biofreeze a try, even though I might have used it back in '07-'08? I've tried several topicals including compounded meds to no avail. Yes, cool surfaces tend to calm down the tingling, so much so I keep a tile under my desk for relief on my bare feet, run the ac in my car at floor level. Shoes are excruciating JUST on my soles, so I try to go barefoot in my house as much as possible...but this presents a problem in that I don't enjoy the 'cushion' effect of shoes while having to stand still or walk.
Standing still 'after' walking is one of the most painful times for my soles. When I move, the tingling can be much less noticeable. Also soles on floor while sitting, driving etc are not happy
Never taken a statin, in fact no rx meds for many years before the neuro symptoms started.
I will add that the nerve pain gradually started after about 2 years of extreme fatigue AFTER I lost about 65 lbs in 2002, intentiontial weight loss via reduced intake/herbal diet supplements. After the weight loss, I started gaining it back, was exhausted much of the time and had a 9 month long respiratory ailment, which was severe at times, so I did not seek any help for it. All of the above between 2003-2004. By spring 2005, first somewhat regular neuropathic symptoms. Saw first MD for burning sensations in Jan 2007 despite not seeing a doctor for at least 15 years prior to that.
I again thank you MrsD for the time you give me and so many others. I do have 'ok' times for part of most days, but this has never gotten easier in the 5 + years of living with it. I work (at home) which does distract to some degree as do some interests, pets etc. Many days the ONLY thing really troublesome are my soles if I do anything that others would consider normal activities. I suppose this is a common scenario here. Sitting becomes painful too, but can be avoided if not in any position of constant pressure for too long?
Will seek some vit/min blood work and check out the biofreeze. Also interested in different rx med combos, but that's for another thread I supose.
Please take care,
JB
