Hi Everyone,
First, huge thanks to you all for this treasure trove of useful information.

I’m new to the forum and do not yet have a diagnosis. I’m 54, about 2 years post-menopause (still having hot flashes). I have a busy, demanding job; some days I feel completely fine, and on others I feel so poorly I can’t get through my work. It’s been an eight month roller coaster of buzzing, tingling, prickling, pins/needles all over my body (arms, legs, trunk, neck, face) and now icy-cold, sometimes burning pain in my feet. A full list of my symptoms is posted below.

My tests, so far, have been normal, except Vitamin B12 (320). Homocysteine is 10.5 (close to the upper limit of 11). My fasting glucose is 89, HbA1C=5.2. About five weeks ago, I finally saw a neurologist after waiting months. He found slightly reduced pin prick sensation in my fingers and suspects small fiber sensory polyneuropathy. He ordered an MRI and advised B-12 supplements (1000 ug per day) and follow up in four months. I began with cyanocobalamin supplements (not knowing any better), then switched to methyl Cbl about two weeks ago after finding this forum. Over the last couple of weeks, my symptoms have become quite a bit worse.

To be frank, I’m frightened of what’s happening and the possibilities that lie ahead.

I’ve read about half of the B-12 sticky thread, enough to decide to increase my B-12 dose but have a few questions for the group:
1) With Methyl B-12 supplementation, is it typical for things become significantly worse before improving? If so, how long might that phase last? When is retesting advised?
2) Is there a thread that addresses icy cold pain and ways to cope?
3) I have essential hypertension and have been taking ACE inhibitors for about 20 years. I have read some Mrs. D’s posts about ACE inhibitors and wonder if this could be at the root of my problems? Should I discuss switching regimens with my primary care provider?
4) Have any of you come across information about connections between estrogen, PN and B-12? I started a low dose estradiol patch about six months ago for these and other symptoms I supposed were menopause related. I found relief for a short while, then the trouble started. Any chance HRT itself might be a problem?

Thanks for reading and for any suggestions.

Midori

My Symptoms:
Every Day, intermittent, mainly at rest: Tingling (glove, stocking, full body, trunk, neck, spine); internal shaking – diaphragm, mainly on waking; tinnitus, high-pitch, sometimes pulsatile; ear fullness - mainly right ear; teeth lightly chatter with internal shaking; hair thinning. Icy cold feeling feet; hands too, but less so.

Once or Twice a Week: internal shaking spine, legs, arms, neck; pins and needles, prickling; finger tips intermittently shrivel; intermittent numbness at night (one, two, or three fingers, hands, arms); body parts fall asleep easily (hands, arms, sometimes legs, mainly at night); sore tongue; disturbed sleep (due to symptoms); formication; lips quiver-shake; hands lightly sting.

Occasional: full body buzzing; finger tips lightly burning; episodes of itching (top of head, neck, chest); bladder sensitivity; feeling unusually cold; lips lightly sting; "rain drop" feeling on head, arms, legs; quick zaps (once in my eye!); deep ache in calf bones (one episode); fatigue; tearfulness; short painful headaches at vertex (occipital nerve endings?); ocular migraines

When there is considerable numbness present, taking B12 initially may wake up sleeping neurons and give the appearance of worsening. Also try to eat high potassium containing foods...as beginning B12 supplementation can rob the body of potassium as the bone marrow makes more blood cells.

Yes, I would change that BP medication to another family of drugs. If you supplement magnesium, you may find you need less BP medication, as fixing low magnesium can lower elevated blood pressure by relaxing the small blood vessels. Do not use magnesium oxide as it does not dissolve in the GI tract and therefore does not provide absorbable magnesium for you.

Make sure you take the methylB12 on an empty stomach for best absorption.

People really vary in regards to hormones. Some find them helpful and others not. Using bioidentical estrogens may help with your side effects. Usually they are provided in a transdermal cream. Just Google "bioidentical hormones", to learn more.

I will mention that I took Ganapentin for all of the symptoms you describe and I felt that there was no improvement. I went up to 900 mg/d before I quit. Some go over 3000mg/d. When I quit it seemed that the symptoms got worse so I guess it was helping. For me, symptoms change and shift priorities with the passing of time. I still have quaking, but just occasionally. I still have Tinnitus, that never changed at all. I have learned some some things that I believe are fundamental. IMO a person needs at least 5 hrs sleep. I have taken Ambien and later withdrew. Pain can drive you to depression, I took Hydrocodone for 8mo and later withdrew. So expect slow change and slow improvement. Flares can come on fast and they are mostly still a mystery. Good Luck and much patience to you. Ken in Texas.

MrsD. Thank you for your thoughtful reply. Your commitment to this board and the support you provide to the community is really remarkable. I am grateful for your willingness to reach out and share your expertise.

Ken, thank you for your kindness. I'm very interested in learning more about your experiences if you're willing to post or point me to relevant threads.

Hi midori

Welcome to NT.

I'm unable to help with some of your questions (no experience with hypertension or ACE inhibitors) but from your symptoms the B12 deficiency sounds like it may be part of the PN problem. The sore tongue is a classic B12 deficiency symptom. B12 is normally stored in the liver with about 5yrs supply so it will have taken a long time to deplete. Therefore it also takes a long time to replenish. The oral supplements will do this but give it time. You may want to get retested after 3 mths of supplementation to see how you're doing. You need to stop taking the B12 for about 4-5 days before the test or it will give a falsely elevated reading.

It is possible there is a connection between hormones and PN and B12. I don't know the exact science but here's a link to a thread that discusses this:

http://neurotalk.psychcentral.com/thread222544.html

I'm not sure from your post if the estradiol patch you were using was pharmaceutical or a natural alternative estrogen. It is important that if you still have an intact uterus to use progesterone with the estrogen to prevent endometrial cancer:
https://my.clevelandclinic.org/healt...ormone-therapy

I don't mean to frighten you further with these details. You're on the right track looking for info. I've found that being informed has helped me manage what I'm dealing with and more importantly to make the right choices for me when it comes to treatment and to stand up for myself when the doctors have made the wrong choices.

All the best for finding answers and improvement.

You can use the search tool and type in at least 4 charachters and search posts that contain the word, lets say, Gabapentin. the word will show up in red so you can scan pretty fast. You can also click on anyones usermane and have the ability to PM or see all past posts. Play around, if you could hurt it I would have already done it. We all love to tell our stories because after all is said and done, our journey is all we have to offer. Ken in Texas.