Posted by: June in Toronto ®
12/22/2002, 13:26:39
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Jeannie, for more info. on peripheral neuropathy, which I explained to you my husband has and it causes him to have those pins and needle-type pains, go to the link below and check out "explaining neuropathy". Good luckJune in Toronto Related link: http://www.neuropathy.org/
Related link: http://www.neuropathy.org/
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Posted by: Jeannie Day ®
12/22/2002, 19:56:55
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Hi June. When you mentioned it before, I wrote it down and I did mention it to my doctor. I will check out your link and discuss it with my husband. Today the pain has been very severe. I'll probably have my husband call.Thanks, Jeannie
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Posted by: Jeannie Day ®
12/22/2002, 20:41:27
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June, I got on the website, but I am unable to register, because I have MSNTV(formerly WEBTV) and not a computer. There are some things that are inaccessible to MSNTV. I was able to open up the part about physicians, but when I tried to open up anything else it said I had to join first. Maybe I will just search for the topic on the web. Thanks for trying.Jeannie from Ohio who is having trouble concentrating because of the pain. It's not constant, but often enough during an hour that it is very uncomfortable.
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Posted by: Jeannie Day ®
12/25/2002, 23:29:20
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Joan, did your husband get an MRI? I mentioned neuropathy to my doctor the first time you mentioned it and he said that neuropathy is a broad term. I couldn't remember the peripheral part that you had mentioned. I have had the EMG and Doppler sonogram. It seems that those would have shown something.The pain starts sometimes in the calves of my legs or sometimes in my buttox. It's almost like some kind of spasms, because the pain soon lets up. I am going to call my doctor again tomorrow to see what he is going to do. Jeannie
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Posted by: June in Toronto ®
12/26/2002, 12:54:44
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I can't remember if my husband got an MRI, Jeannie - he's had idiopathic peripheral neuropathy for over 20 years now. I would ask him but he has something like montzuma's revenge today (may that n.virus that is going around) and is in bed. Usually (?) pn starts in the extremities and the feet, then travels up the calves and shins and on - then to the hands, and more. There are approximately 100 different neuropathies, as I believe I mentioned before, many caused by diabetes, others by medication, chemotherapy and a lot of unknown causes. PN seems to go from mild cases to full-blown muscle weakness and wheelchair-bound types. You said your pain lets up - that doesn't sound like pn to me now. I hope you get some answers soon. June in Toronto
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Posted by: ClaireW ®
12/26/2002, 13:08:10
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jeannie, i know i suggested thyroid to you..i'm glad your results were all fine...after my experience I think it's a silly one not to check as time could be wasted...Now i have some other info...but i don't know where i read it..as i have multifocal dystonia, and not just bleph i have read up a fair bit on both...somwhere i read that dystonic episodes can be heralded by pins and needles...if i have been overdoing things i get pins and needles....but more than that..i get really severe muscle pains..usually my thigh muscles and the bottom of my feet...they arch badly...sometimes my shoulders.
However it has always evemtually gone away after a few weeks. It still happens...but not as often now my thyroid is in balance.
I know you are a teacher..have you been doing more standing up or walking round than normal? that can trigger things for me.(Standing up to do baking can set my legs off)
I do so hope you get an explanation soon...it is horrible to have discomfort and pain and not understand why.
Hope you have had a good Christmas,and that your new year brings you some answers,
Claire
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Posted by: Jeannie Day ®
12/26/2002, 14:29:56
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Joan and Claire. Thanks for your responses. I've been doing some more research on the web. It's possible that I have a vitamin deficiency. The symptoms seem to fit the peripheral neuropathy(sharp deep stabs, pins and needles). Symptoms of automonic damage: diarrhea, thinning of skin, with easy bruisability and poor healing. I couldn't find anything that stated the pain was constant. I don't have any drawing up of the muscles. I am on my feet probably 50% of the time during school. But I'm used to that. I am waiting for my doctor to call me this afternoon. When I called his office this morning to ask what the next step was, his nurse said that he was planning to call me this afternoon.
I'll let everyone know-- just in case there is someone else out there with these same or similar symptoms. from Jeannie in Ohio who is watching the gray and black squirrels in her backyard eat the food she threw out to them.
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Posted by: ClaireW ®
12/26/2002, 18:03:52
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That's interesting you mentioning vitamin deficiency...when my symptoms first started three years ago the first suggestion was a vitamin B12 deficiency...I started taking B vitamin supplements anyway..my present neuro thinks that they don't do any harm./.and may even likely do some good. i just took a general B supplement...my then neuro also told me to take vitaminE as he says that it has been shown to alleviate some brain degeneration..in sensible doses it can't do any harm..so I take it when I remember!
Blood tests can clearly show if you have some vitamin deficiencies. it sounds as though as you have a useful GP who will help and listen to you.
hang on in in there,
Claire
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Posted by: June in Toronto ®
12/27/2002, 17:39:42
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This is only part of an article taken from the PN bb - written by a lady who has researched B12 and PN thoroughly - she was in a wheelchair because of the B12 deficiency that doctors did not acknowledge/know about - she is now out of the wheelchair. Further in the article she quotes a medical doctor's full report that confirms this, but I can't post the whole. Hope this helps....June in Toronto"B12 malabsorption. Check it out early. Medical researchers and medical journals have been warning for decades that anyone (regardless of diet) can become B-12 deficient. Occasionally it happens early in life, but it becomes more common by middle age. One of the problems B-12 deficient people can develop is Peripheral Neuropathy (PN). If B-12 deficiency is not eliminated while the damage is minor, it is common for the spinal cord to become damaged. Eventually, if still untreated, irreversible damage to the central
nervous system is likely to result in heart failure and/or
Alzheimer's-like symptoms and death. Research during recent decades has shown that people who have
neurologic damage as a result of B-12 malabsorption are
misdiagnosed even more often than previously thought. They are
being allowed to worsen unnecessarily for lack of a safe and
inexpensive vitamin. People who have neurological symptoms should have a B-12 serum (blood) test immediately (not after weeks, months or years of other testing). If testing is not possible, they should take at least 1000 mcg B12 while continuing to look at other possibilities. If B12 deficiency is the cause, they will almost surely stop the damage within weeks and begin the months-long (years in more serious cases) process of repair. If the B-12 test result is clearly deficient, B-12 therapy should be given immediately and follow up tests should be scheduled within a month or so. B-12 treatment should be continued, because most people who malabsorb continue to do so for life. Please obtain copes of your B12 and other lab results. Hearing "It's normal" or "everything is fine" from most doctors is meaningless, because they don't know how to diagnose deficiency. Many think that a result within "normal" range rules out deficiency - it clearly does not, especially in a patient with neurological symptoms. Many doctors think that ruling out anemia eliminates the possibility of B12 deficiency--on the contrary, people low in B12 who do not become anemic are more at risk for severe neurologic damage. Many patients are damaged, even disabled while testing well into normal. Rarely, patients are deficient even when blood levels are high, because B12 does not work in the blood; it works in the tissues. Some people can absorb B12, but they cannot deliver it from blood to tissues. If the B12 result is not clearly deficient, the patient with neurologic symptoms should have follow up tests: methylmalonic acid and homocysteine. The two follow-up tests have a good, but not perfect, record for exposing deficiency. In case you are one of the for who test "normal" all round and are being damaged by deficiency, it is a good idea to take at least 1000 mcg B12 per day to cover the possibility that you are in that minority. In that case, one can only hope. If follow-up testing cannot be obtained right away, the patient should consider taking at least 1000 mcg of B12 (methylcobalmine type) on the chance that it is needed. If deficiency is causing the damage, sufficient doses of B12 will stop the damage and eventually allow some degree(sometimes 100%) of recovery."
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Posted by: colleen ®
12/27/2002, 18:42:45
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Hi June A very good article on B12.My mother had a b12 deficiency for
years.The doctor was treating her for an iron deficiency.She was allmost bedridden.I got her to another doctor who checked her B12 first
thing.He started her on a b12 shot every month. like anew person in no time.B12 was one of the things i had my doctor to check when i came up with these neurological disorders. I was ok. Didnot know that i should be checked again.Thanks alot for the information.
Colleen in IL
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Posted by: June in Toronto ®
12/27/2002, 20:08:16
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Colleen, there's a lot...more to the article. I can try and e-mail it to you if you wish?June in Toronto
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Posted by: colleen ®
12/27/2002, 21:35:49
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June I would like to read more if you would email it to me.
Thanks
Colleen in IL
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Posted by: June in Toronto ®
12/28/2002, 15:37:34
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Colleen I sent the e-mail to you - the last 3 letters of your e-mail are con ! Usually its com but that's what I got from your post. Hope its ok.June in Toronto P.S. my e-mail came back and I re-sent it addressed to .com
--modified by June in Toronto at Sat, Dec 28, 2002, 16:41:01
Modified by at Sat, Dec 28, 2002, 16:41:03
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Posted by: Christel-California ®
12/27/2002, 22:48:59
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June, could you e-mail the article to me also, would greatly appreciate it. Thanks in advance. Christel
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Posted by: MaryNY ®
12/27/2002, 21:20:29
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June - Do you know what the level of B-12 should be, if it's shown by a blood test? Several years ago, a dr. told me to take a B complex vitamin, which I do, but I was never quite sure why. "It's good for you" is all he said! It was never connected to my BEB. I have been told that I have fat red blood cells, whatever that means! Mary
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Posted by: June in Toronto ®
12/28/2002, 16:04:51
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I'm no expert in this Mary, BUT from the little I understand - if your blood count result for B12 is under 400 (even 350 is low), your Methylmalonic acid (MMA) and Homocysteine (Hcy) should be tested. If one or both are elevated the B12 test result is probably falsely high, and treatment is indicated. Many doctors believe that if a patient does not show signs of a blood disorder they cannot be deficient in B12 - wrong. Some people are disabled by B12 deficiency while showing no signs of the blood disorder (a type of anemia). In the ongoing Framingham (Massachusetts) Offspring Study researchers found that 39% of the 3,000 volunteers (men and women) had plasma B12 levels in the "low normal" range below 258 picomoles per liter (pmo/L). While this is well above the currently accepted deficiency level of 148 pmo/l, some people exhibit neurological symptoms at the upper level of the deficiency range....explained by study leader Katherine L. Tucker (a nutritional epidemiologist at the Jean Mayer USDA Human Nutrition Research Center on Aging at Tufts UIniversity in Boston.I hope I haven't confused you Mary - I'm not sure i understand it all myself:-) June in Toronto
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Posted by: MaryNY ®
12/29/2002, 20:52:03
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Thanks for your answer, June. I'll try to digest that! I think I have a record somewhere of my last blood tests (well, not the last one - they never sent that to me). Don't you wish "they" would say these things in "layman" terms? Mary
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Posted by: June in Toronto ®
12/30/2002, 06:53:22
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Layman terms would be nice, Mary, and even presciption writing that was legible! CheersJune in Toronto
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Posted by: Ann Doyle ®
01/01/2003, 17:02:12
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Laymens terms for Benign Essential Bleparospasm with Meige Syndrome
Benign--it won't kill you
Essential--we don't know what causes it
Blepharspasm---the muscles arooung your eyes spasm
Meige---the name of the man who discovered it was the same thing from the same part of the brain disorder going to different places in the face.
Syndrome--I would have to look that up in the dictionary and I'm to lazy right now. Time for news and dinner. Ann Doyle
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Posted by: Delaine Inman ®
12/28/2002, 09:26:32
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That is very interesting. I have been rather anemic (and so is my daughter)all my life. She is already showing symptoms of fibromyalgia and has had episodes of symptoms of BEB when she is under extreme stress.
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Posted by: ClaireW ®
12/28/2002, 11:23:08
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I have read somewhere that vitamin E is suggested for people with Cortico basalganglionic degeneration...apparently it stops free radicals attacking some essential fatty acids.
As the basal ganglia seem involved in BEB / Dystonia i wonder if it would help us. There are two types of Vitamin E, one better than the other...maybe someone else can shed light on this?
Wishes,
Claire
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Posted by: June in Toronto ®
12/28/2002, 15:30:22
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The Natural vitamin E is better than the chemically made one, Claire.June in Toronto
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Posted by: Jeannie Day ®
12/28/2002, 21:13:53
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Joan, would you e-mail the article about B-12? I just read your post, because I've been sick in bed with a virus since yesterday. My doctor called me yesterday(Friday) morning and I told him I wasn't feeling any better-- "pins and needles" and pain. I had already read a little about B-12 deficiency and asked my doctor about it. He said that he wanted to do a blood test so I asked if I could go the same day. The results won't come in until Monday or Tuesday. It would be good for me to have this information before I get my results. Thank you.
Jeannie
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Posted by: June in Toronto ®
12/29/2002, 08:13:50
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Hi Jeannie - its JUNE, not Joan, but that's ok!I've e-mailed you the article - hope the doctor did homocystein and MMA tests as well as the usual blood work for B12 (you'll read about them in the article) and get a copy of the results with the FULL results on it. You good folk on the bulletin board should note that taking extra B12 methylcobalmin-type (if you are deficient) might take quite a while before results occur for the good. Results can also cause more pains whilst nerves are regenerating - this can be an up-and-down process, BUT please be assured that taking extra B12 will not harm you - extra is eliminated from the system like vitamin C. Take care June in Toronto
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Posted by: Jeannie Day ®
12/28/2002, 21:23:27
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Joan, something else I read about B-12 was that taking large amounts of B-12 could cause a B vitamin imbalance. It stated that a B vitamin complex should be taken in addition.I just wanted to add this. I'm going to sign off now, because I'm feeling too sick to continue. Jeannie from Ohio
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Posted by: June in Toronto ®
12/29/2002, 08:22:19
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Yes I knew that Jeannie about B vitamins - but I didn't want to confuse people when we were talking about B12 - there's really a lot to know about it (and believe me I don't know much!). If you decide to buy any B12 vitamins (methylcobalmine type) I can tell you where to order a good type on-line if you e-mail me.50 mg (maximum) of B6 (P-5-P type -- Pyridoxal-5-Phosphate) vitamin is more likely to be effective than found in any B complex. The B6 P-5-P should be taken at a different time to any B12 vitamins. Calcium/magnesium (especially at night) is good for spasms in legs and feet. Alpha-lipoic acid (500/600 mg split into 2 doses) helps with any numbness. Hope you feel better son. JUNE in Toronto
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Posted by: ClaireW ®
12/29/2002, 09:13:22
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Careful with B6 if you are taking sinemet.it can affect absobtion.
Claire
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Posted by: Jeannie Day ®
12/29/2002, 21:38:18
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June, thanks for your response and for your e-mail. I printed it to read before I see my doctor again.I guess I must have been pretty sick. I called you Joan in my last post. I started feeling better about 1 p.m. today. That is except for the pins and needles. I am interested in the information you mention about where to get the B vitamins. I will e-mail you. Jeannie from Ohio
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Posted by: June in Toronto ®
12/30/2002, 06:54:36
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I e-mailed you the information about where I buy B12's Jeannie. Hope you feel better real soon.June in Toronto
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Posted by: Kelly Saffell ®
12/26/2002, 14:43:13
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My husband's grandmother has neuropathy. I think hers is her feet. She is in her 80s and is now in a nursing home using a wheelchair and seems to be doing very well but I know when it first started a couple of years ago she was in alot of pain.I had that pins and needles feeling under my shoulder blade a couple of years ago. My left arm became weaker than my right so I had an MRI and it didn't show anything. Mine was caused by a nerve pinched in an extremely tight muscle. I have a great muscular therapist with advanced training in neuro therapy and she worked it out and continues to alleviate my pain regularly. Hope you get an answer soon.
Kelly in Dallas
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Posted by: Jeannie Day ®
12/26/2002, 17:52:55
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Thanks Kelly. I guess there are so many things it could be. My next thought was to go to a physical therapist. With my new insurance I don't have to have a referral. My doctor did not call me back today as his nurse said he would so I'll have to call him first thing tomorrow. Jeannie from Ohio
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Posted by: Delaine Inman ®
12/28/2002, 09:29:24
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I get the pins and needles sensation with my fibromyalgia in my neck, shoulders and back when I have a really bad flare-up.
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Posted by: Jeannie Day ®
12/28/2002, 21:17:05
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It seems as though "pins and needles" is a symptom of several different problems-- another reason it is so hard to diagnose.Jeannie
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Posted by: joyce whitt/NC ®
12/29/2002, 11:06:42
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Jeannie, all this talk of "pins and needles" made me think about my magrine headaches. When I have them, the top of my head feels like "pins and needles" sensatins along with the other pains that I have. My migraines are in the vacular defination because I see no aura and they always start in the middle of the night and my head hurts all over but the main pain is in the area nehind my eyes and my eyes burn.Does anyone have headaches like this? Joyce in NC who is getting a cold and sorethroat and I leave Tuesday on my way to Salt Lake City. Can't take aspirin or ibuprofen. I am going to check the druggist if I can take Aleve, if not, I will have to go to the doctor tomorrow. Gotta get well before I go.
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Posted by: Patti Miller ®
12/29/2002, 16:34:15
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Joyce, I'm anxious about your trip to Salt Lake City. When will you be back home in NC? My prayers are with you and that you'll have just as good a trip as we had. I'm still swollen and bruised, but that is what everyone told me to expect and I'm trying to be very patient. Remember - I'm still glad I went and I know you will be too. Have a great trip with wonderful results! Patti in SC
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Posted by: Jeannie Day ®
12/29/2002, 21:55:28
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Joyce, I hope you feel better by Tuesday. I will be praying for you. I had a limited myectomy in 1998 by Dr. John Burns in Columbus, OH. He did a great job. Everyone at home and work noticed a difference.RE: migraine headaches. I read somewhere that we should never accept symptoms of sickness as something that cannot be corrected. Any symptom has a cause and there is someone who can find out for you. Jeannie from Ohio
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Posted by: Moderator-JB ®
12/30/2002, 12:06:47
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Jeannie,Have you ever been to a MDS (Movement Disorder Specialist)? Judy
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Posted by: Jeannie Day ®
12/31/2002, 00:03:11
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Judy, no, and I'm not sure there's one in this area-- Dayton, OH.-- Maybe Columbus, OH, but I don't have a phone book for there. I guess I could contact BEBRF.I didn't get my B-12 test results yet, but I decided to start taking B-12 and B-Complex first. The pins and needles have gotten worse since yesterday. They bothered me after I went to bed and that was when I had NOT been having that sensation. Jeannie from OH
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