Mrs. D:
Just a reminder, I started with a Vitamin D level of 16.2. In March after speaking to you, I raised my Vitamin D to 4600iu. I was better within a week. I kept it there about eight weeks and had another test. It went to a 41. The normal range on the test was 40-100, my insurance says, once I reach 'normal,' they only pay for a test a year.
I dropped it down to 2800iu. Calf nerve pain came back, just a dull ache. Spoke to you on this thread, raised it back up to previous level. Joyfully, the ache went away again.
I just fear keeping it that high will bring up to toxic level in say four to six months or so. And then I won't know about the level. I read about a home vitamin D test on line I'm going to try it in about 2 months, see if it works. It's 50 dollars or so.
Are my fears irrational with vitamin D scores so low? I know you said let your leg be your guide, which sounded like a great idea to me - What do you think, if you don't mind me asking. Thank you again, Karen Sharp
PS I really appreciate the invaluable help I received here : Main Items: The Vitamin D help - took away my 'ball and chain' endless calf cramp/nerve pain, the Benfiotamine - took away nerve pain, the Alpha Lipoic Acid, took away more nerve pain...
NOTE ALSO: Spoke to a chineese urologist I've known forever, mentioned all this to him, he told me to get progesterone cream from a health store - He's focusing exclusively on bioidentical hormones now.. I'm entering menopause same time came down with PN - that took away the rest of the nerve pain in my lower back.
BACK TO THANKFULLNESS OF THIS SITE: Went to see neurologist last week (before lowering vitamin d level when everything was hunky dory) Gave him GLOWING REPORT along with my list of supplements and such... No more nerve pain, no more calf ache, no more strings of nerve pain in rear end... it also 'doesn't get worse as night approaches' anymore... zero tingling in feet -just gone. Gone so long I almost forgot to add it to the 'gone' list...
Very rarely do I take my bipolar medicine early to deal with pain. I told him I go for days forgetting I have it and for most days, great hours of time forgetting I have this. I rarely have to limit physical activity - no more deciding whether to wash to car or go on bike ride as too much brings on nerve pain.
(Note - had my Vitamin D listed as 2800IU- just an error - I asked him about the Vitamin D level, he said it was ok with my score at 41 and could even go up a bit - I realized later that he was looking at the 2800IU number)
He looked at my long list of supplements and said, "Well gee, it's quite a bit but I have to say it's working."
I will post my long list of supplements but have mentioned The Big Guns above, some of it is for arthitis and menopause, although I've seen mention of most of it working also for PN. (You will not see fish oil in my list - despite taking scads of it before PN, I still can't take fish oil - causes nerve pain all over- neurologist could give me no reason for this
As promised - here's my "LIST"
As of June 3rd, 2013
Over the Counter
Generic Claritin, Loratadine 10mg per day, morning – spring allergies
Trying to sleep despite menopausal insomnia: Diphenhydramine 100 mg per night (Generic Sleep Pill - Diphenhydramine 50mg and two Generic Benedryl- Diphenhydramine 25mg each Just now realized these were the same thing)
Vitamins
Vitamin D 4600IU per day (had reduced to 2600IU, per day, calf nerve pain in right leg came back, increased back to 4600IU per day, calf pain disappeared again in a week ) Recommended Mrs. D
B Complex same as before-B12 6mcg,Folic Acid 400mcg, B6 2mg,Vitamin A 750 IU (recommended orthopedic doc –PN – he had it too)
B6 100 mg. (recommended Neurologist, the ONLY thing)
Benfotiamine 2 and a half 250mg capsules per day, 625mg per day- recommended Stacy of Neurotalk
(Increased to stop nerve burning in upper thighs, rear end)
Calcium 600mg- arthritis
Glucosamine 1500mg Arthritis
Alpha Lipoic Acid 200mg -3 per day or 600mg total per day)
(Further reduced nerve pain in upper thighs- recommended Neurotalk)
Cinnamon 500 mg per day- me, controls blood sugar
Progesterone Crème – over the counter, Femgest, ¼ teaspoon (Recommended by Dr. Yu – Annapolis; stopped the nerve pain in my lower to mid back- 92%- that had started the day of my last appointment- recommended Dr. Yu)
Flaxseed Oil. 2 or 3-1000mg softgels per day. Recommended both menopause and Neurotalk for PN
OTHER
3 tablespoons Flaxseeds per day- sometimes more – have to eat this early in the day or it keeps me up at night. Recommended both Neurotalk for PN and for menopause