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hi joycie nice to meet you sorry to hear about your mum and dad. in answer to your question re b12 taken orally it would be no use at all if you have pernicious anaemia but b12 deficient if taken in high doses is usually sufficient. medics can be very ignorant and i would have fought their decision but in uk they wont give injections of b12 unless you have PA which personally i think is all wrong as b12 cannot be overdosed and always does more good than harm i need it to stay alive and function otherwise in afew years i would die.hope you are well joycie. please stay in touch and i am really sorry about your mum and dad i think i would try and sue their doctors if you are upto it but usually you are fighting a losing battle in our country the nhs stick together. lots of love sonia m xxx
-------------------- s martin Posts: 45 | From: salford england | Registered: Jun 2008
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quote:Originally posted by sonia m: hi rainn you are so kind.good wishes to you always. i find you very informative and will certainly tell my niece claire such a lovely girl about sallys website. i will write you a longer note soon. i suffer from severe anxiety and depression and a long list of other illnesses but i try to help people less fortunate. have been a carer as a job so know some suffering. now i am too ill to work myself. hope you stay well lots of love sonia m xxxx
-------------------- May we all join together and help in finding cures for all movement disorders, and helping others in these trying times. God Bless The WORLD. Posts: 78 | From: Swamps of the HEARTLAND, just west of the GHETTOS, in THE GOOD OL USA | Registered: Nov 2006
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Hey Sonia, Been a while since I heard from you. How are you doing? Very well I hope. I am doing very well myself. Sonia, if you will send me your email address, I will send you something that may help you. Drop me a line just to let me know you are okay.
Until next time. God bless you and yours.....
Your friend...........Rainn
-------------------- May we all join together and help in finding cures for all movement disorders, and helping others in these trying times. God Bless The WORLD. Posts: 78 | From: Swamps of the HEARTLAND, just west of the GHETTOS, in THE GOOD OL USA | Registered: Nov 2006
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hi rainn so glad you are well keep flying the flag.not good news for my sister claires mum she is not well at all.she is getting more care and has fallen recently which has knocked her confidence. she seems depressed but will not take the anti depressants. claire has been great going to see her every day. i have been staying as i often as i can but she lives quite far from me. she has carers who are staying with her all the time but this ends on monday i am trying for extra visits from the carers. we have had some severe weather snow and ice its like the north pole where my sister lives. i live near manchester and the weather is not as bad but cold and rainy. so sorry i havent written sooner been worried about my sister. you are a great friend i feel so helpless and wish i could do more for my sister. she is seeing the specialist soon as the doc was called out by the carers when she fell.hope to hear from you soon and let me know about the weather in good old usa our very dear friends.lots of love rainn and please stay well.
-------------------- s martin Posts: 45 | From: salford england | Registered: Jun 2008
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hi rainn my email address is soniamartin25@yahoo.co.uk. would be lovely to hear from you and any help much appreciated.lots of love and take care rainn sonia m
-------------------- s martin Posts: 45 | From: salford england | Registered: Jun 2008
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I hope my experience can help someone. Please feel free to question or respond. You are not alone. You are not crazy. If you have B12 deficiency and are just starting injections, be patient! IT TAKES TIME! I know you wanted to feel better yesterday or last year. I know you want to eat a regular meal and not suffer. I know you want to wake up and feel strong and alert. I know you want to be pain free. I know you want your eyes to work properly. I know you want to stop feeling like you want to jump out of your skin, or lash out at someone. I know you want to be able to walk without feeling vertigo or stumbling against the wall. I know you want the depression to go away. If your B12 level is under 300 and your doctor is not giving you injections, get another doctor! If your doctor wont check your level, get one that will! A good level is 500 or higher. 300 or lower causes neurophyciatric symptoms! Brain symptoms! If this sounds like you call your doctor tomorrow! Again, you are not alone! This is what happened to me: Oct 2003 start Now I know everyone is different,so you may have some or all of these symptoms. Get ready, there are a lot of them. First off was a bloated, full feeling after dinner. Only dinner. That lasted for a while then progressed to every meal along with gastritis. It worsened slowly then added chest pain with it. I then started to get weaker and tired more. I knew this was not normal for me. I am a hard working, fit, 50 year old female. I usually run circles around my teenagers. This slowly progressed until one night in May 2004. I was getting scared about the chest pain and dizziness I was feeling. I went to the ER. I was put on heart monitors and evaluated. I went home with a script for carafate(stomach coater) and blood work. I followed up with regular doctor whose 1st response was "why so many tests?" I explained how I'd been feeling and he gave me a script for antibiotics(UTI), and an acid reducer(Prevacid). I said "what about my chest pain?" He said "The antibiotics should take care of that". WOW! I might be blond and female, but I'm not stupid! I was back in the ER the next month (June 2004) with the same symptoms, but worse. Doctors thought chest pain was costalcondritis. Still had UTI. No recheck. This round of antibiotics worked on UTI only. Had stress test, results negative. In March of 2005 still getting worse. Doctor ordered Upper endescope and GI. Results were excessive stomach acid, mild acid reflux and hiatal hernia (small). We did more blood work. Nothing! Still on acid reducers. Gradually other symptoms started to appear. I called doctor more often and made no headway with him. All he did was prescribe muscle relaxers and antidepressents! Ever try amitryptalene? Put me out a couple of days. Doctor usless never heard me when I said I dont want anything thats going to make me feel groggier! Only tried those meds once. Threw the rest out. The only other test Dr. Usless tried was a gallbladder scan. Negative I was losing weight. Tried to eat something from the 4 food groups to keep strength up. this was my diet for over a year. Boiled chicken, potatoes, carrots, toast and a can of ensure. Anything that digested easily. Earlier I was eating pudding, milkshakes, icecream, soft food. Doctor usless never told me dairy was out with stomach acid problems! I also lost hunger pang feeling. That took a year to come back. More symptoms: Weakness: all over (especially in arms, legs and hands. Arms felt like wet noodles and hands had slight tremor all the time. Walking: stumbled frequently (no I dont drink) walls are my friend and I still have that problem. If I took a walk (tried twice a day) afterwards my legs would have spasms the whole length. Palpatations under the skin, especially in calf area. Muscle spasms: in arms and restless legs ( still have restless legs) Eyes: Stys, not focusing correctly, light sensitive, right pupil enlarged(freaky) and I saw blue flash out of the corner of my eye. Nobody ever explained that one! Checked and no diseases Light headed: vertigo, just not alert, felt high everyday. Nauseated: everyday, strong odors like bus, smoke or gasoline made me worse Cold all the time, not chills, just cold Bladder: frequency and incontinent also UTI Weight loss: Went from 5'6 130 lbs to 115lbs, way too skinny Short term memory: terrible and doctors blow it off Speaking: hard to get words out and make sense Skin: sensative, hurt when itching self Shock feeling: back of neck (scary) felt like cattle prod might feel Heart: palpatations always at night in bed Pain: in places I never felt it before. back and neck, burning, stabbing pain Doctor says, your not getting any younger you know. I say its not normal, I know my body! Muscles: soreness..shoulders, neck and back Depression: set in slowly..very irratable to family members. Jumpy, edgy and nervous. All totally not me. Have never been prone to depression. I ended off work on disability. Dr. Usless did nothing more to help me. I kept calling and he finally said when are you going back to work? I said I'm not better! He gave me one week. I had to go because of disability. I lasted one week and was back in ER. They gave me some stomach concoction and another stress test (neg). Dr. Usless said I had him stumped. NO referral NO NOTHING. OK then. I'm home, very ill, know this doc is a quack, so I need a new course of action. I feel alone, scared and frustrated. I have a job I can't do, a family and house to take care of and all of us are worried. First stop is a stomach specialist. A woman! Dr. Mary listened and tried a few meds. Some masked, but didn't take care of the problem (severe gastritis). My stomach hurt with whatever I ate. It didn't matter if I ate boiled chicken or a hot chicken wing! Same results. I reserched and thought I had H-Pylori (stomach bacterial inf.) We tried prev-pac (2 antibiotics and prevacid combo) WOW it worked! Guess what? A month later it was back. Tried it again. It worked for a while and came back again. I think it just helped calm the inflamation going on in there. 3rd try of prev-pac did not work. Dr. Mary would take my chart home and ponder.(at least she was trying) I also tried rhumatologist and endacronologist. All testing neg. I have an aunt on dads side with rhum arth. I decided to try a doc here who I knew did stomach surgery, like gast. bypass. I thought he might have an idea about my problem. He ordered a gallbladder scan. Came back positive. I cried because I thought this was finally the answer. The boiled food diet I was on I was putting through the blender by then. Yuk! I entered surgery with thoughts of pizza, breyers vanilla with peach schnapps drizzled on top and lobster. Within a week of surgery I was way worse. Could not believe it. Dr. Mary suggested I get an MRI on my brain. Called new regular doctor (also a woman) Dr. Michele and she ordered one. My tests came back and showed unspecified areas. She referred me to Dr. Peter a neurologist. OK now i was really scared! Dr Michele was kind of leaning to MS. I have an aunt on dads side with MS. I tried not to freak out until I talked to Dr. Peter. I wanted to be told something. Put a name to all this! I just did not want a death sentance. I have a sweet and caring husband, and 4 kids. My youngest 14. What would happen to all of them without me? Many times I thought the worst. Please God no MS. My appointment with Dr. Peter was long and exhausting. He tested me and we talked. He assured me that the leisions were not MS (HUGE SIGH OF RELIEF) He also told me he would not abandon me. He would figure this out! He ordered bloodwork. I cried because it was a relief to find a doc that was sincerely concerned. My second visit he ordered a lumbar puncture. I agreed. In the meantime, I'm reading a column in the paper. A doctor question and answer column. It's called Dr. Gott. Someone asked about B12. He gave a few symptoms(research only gives a few also). I showed my husband and he said to call the doc. Dr. Michele ordered it and it came back low. I started injections in 2006. I asked Dr. Peter if we could put off the lumbar puncture. He said yes, but wanted to monitor me along with the shots. This took a lot of patience. I had shots for 6 months before I felt anything! It took almost 2 years to heal along with physcial therapy to get my body going again. I was a mess! Its a slow comeback, but it is a comeback! I still have stomach upset once in a while. My eyes will never be the same. The pain is my biggest beef. Im back to work and do too much, like the old me. I'm OK with that, and I deal with the pain by keeping busy. No meds, Do not want any. Stomach can not tolerate them anyway. If I did not see Dr. Gotts article I'd probably be dead. I'm happy I'm alive, and pretty much well. If this is as good as I get, I can deal. I found out after the fact that my Dads Dad had pernicious anemia. Inherited? My regular Dr. now screens all patients at their physcial for B12 because of me. I highly recommend the book "Could it be B12" to anyone suffering with this problem. The woman who inspired it lives in my neighborhood. A few months after starting injections, I tried sublingual B12. My level jumped right up. Try it. I still do both and feel good when my level is 600 or higher. Again, you are not alone. Peace, Cindy
Posts: 6 | From: Lockport, NY | Registered: Jan 2009
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I was wondering if any of you have gained weight in regards to the b12 deficiency?
I also wanted to add to a comment made earlier, my nuerologist says she does not like her patients to go under 400, she has had several patients with really severe memory loss at 350. She even said really 4 times.
Posts: 1 | From: Cincinnati | Registered: Jan 2009
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As you read in my post, I lost weight. I had a very bad time with my stomach. From what I've read, a level under 500 is considered low. I know I feel better when mine is 600-800. Are you sick?
Posts: 6 | From: Lockport, NY | Registered: Jan 2009
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Rainn, I get cyanocobalamin lcc, lx a month. I also (inbetween) take sublingual B12 same as above l00mcg/Folic Acid 400mcg that I get at GNC. It helps keep up my level. Copy and show your doctor my story, see if it helps. Tell him you have to keep checking your level every few months. He should know that it takes time to see results. Have you ever checked folic acid level? I also take multi, fish oil, B1, B6, and calcium-D. I eat regular diet now. It sure is nice not to have stomach ache!!! Took a long time to get here. Keep on that doctor! B12 shots cant hurt you. Geeze!!! Sorry I took so long to get back to you. Lost started again tonite!!!!! cyndyd
Posts: 6 | From: Lockport, NY | Registered: Jan 2009
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Hi Cyndyd: Just wanted to let you know I got your emails. Thanks a lot. I bought several books "Could It Be B12? An Epidemic of Misdiagnoses" written by Sally Pacholok and have sent them all over the world to some of my friends. Sally has emailed me a few times, and I am getting ready to send her my results of my tests. I had the urinary MMA test, folic acid, all that done, and am just now getting the results. Going to take the shots and the Methyl B12. Just wanted to respond to your emails...'til later...Good luck and God Bless Rainn
-------------------- May we all join together and help in finding cures for all movement disorders, and helping others in these trying times. God Bless The WORLD. Posts: 78 | From: Swamps of the HEARTLAND, just west of the GHETTOS, in THE GOOD OL USA | Registered: Nov 2006
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hi rainn and cindy, cindy you have just described all my symptoms before i was diagnosed with pernicious anaemia PA from now on and it was the worst time of my life. i have just wrote a long message to you and rainn and wiped it ou like a fool.i had all of your symptoms and the rest fainting fatigue stomach cramps so i was scared to eat i still have to be careful what i eat. i lost weight too. i have been getting b12 shots for 2 years but have to have them every 2 months because of permanent neurological damage in my hands and feet numbness. i was getting confused through dehydration depression was getting worse i suffer with severe anxiety and depression. i didnt know where i was or how to get home thought i was going mad. i am on hydroxocobalmin which lasts longer than cyano but has the same effect. the last injection was great nurse went right into the muscle hurts really bad but is so worth it. i am 57 and felt 80.i was so tired i just slept all day and night and still felt tired very weak unable to walk properly without holding onto something i looked drunk walking down the street but i am teetotal not touched alcohol for thirty six years i was 21 and got drunk so ill i never touched it again. hi to rainn and thankyou very much for sallys book could it be b12 it was a godsend i read it every week as everything does not sink in with me lost my short term memory. so glad you are well rainn please keep in touch. lots of love and take care from sonia m xxx
-------------------- s martin Posts: 45 | From: salford england | Registered: Jun 2008
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To Sonia, Hi, I have an appt. with my neuro doc this Tue. I am going to discuss changing over to MethylB12 and the rest of the supplements that go with them. I've had him look into another website (Wrongdiagnosis.com) There is a huge thread on there about PA and B12 deficiency. I'm learning that it should'nt have taken me so long to get healing results. (cyanoB12) I'm eager to try as I still have lingering symptoms. Pain in muscles and joints is my biggest complaint now. I'm 50, but very active physically. I'm a floral designer and on the side in the summer I do landscape design. All very hard on body. None of it ever made me hurt this bad until I got sick. I can deal with the pain, but would rather not have it. Hope to start MethylB12 soon. You should also look into it. I'll let you know when I start. Keep in touch.
Posts: 6 | From: Lockport, NY | Registered: Jan 2009
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hi cindy thankyou very much for your message. i have pain in my legs when i walk it is called neuropathy which is damage to nerve endings my symptoms are similar to ms. so glad you are dealing with the pain your story sounds horrific fortunately my doctor did a blood test which shows enlarged red cells classic PA symptoms. unfortunately it took 6 years for him to diagnose me i have suffered with depression and very low blood pressure for 17 years and he put this down to my depression. i know the symptoms are similar but like you said you know your own body and i knew there was something wrong with me but didnt know what. please let me know how you go on with the neuro specialist.i am sure i have suffered neurological damage because of mis diagnosis. i didnt go through any other tests your dr useless was living upto his name lol. my gp is not having it but i am ready for him and have just copied most recent seminar from pernicious anaemia society online. it is uk based but have alot of americans and canadians 3000 members. thanks for the website on wrong diagnosis will definately look at it. lovely to meet someone in new york and hope your weather has improved ours has got warmer and wetter. take care cindy lots of love sonia m xxx
-------------------- s martin Posts: 45 | From: salford england | Registered: Jun 2008
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Dear Sonia, Just know this, when you feel better your depression will go away too. I experienced it also. I was never prone to it. Have new found respect for people who live with cronic pain or who are home bound and sick. I am back to my happy-go-lucky self now. There is hope for you too!!! Bye for now
Posts: 6 | From: Lockport, NY | Registered: Jan 2009
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Hi Sonia I have tried to email you several times but it comes back as un-deliverable. Please send me your email address again. How have you been doing Sonia? I have been doing well. At the mopment, I am sitting in my "glass room", thats what I call it, but it is actually just a room added to the front of the house with nine big windows all the way around it. Anyway, as I look outside, I can barely see the other side of the road in front of my house. It is snowing that hard. Freezing now and Thursday, it is going to be 73 degrees. wonder so many people are sick. How is Claires mum doing? I pray for her often, actually I pray for everyone. Sonia, I have some grand and great grand babies down close to New Orleans, Louisiana, and I have to email them. I believe when the weather gets better, may this coming Thursday, I will make a drive down there and stay four, five, six days...just whatever. Thats the nice part about being retired. I just wish I could walk and talk a little better. I am not complaining about the shape I am in, because I still drive, can walk with the walker, and a little without it, but my speech really isnt improving that much any more. I know the more I use my voice, the better it should get, but bless my two little house dogs, and my son two dogs, which I babysit for during the week while he teaches....I sing to them and talk to them so much, now when they get tired of hearing me sing,they look at me with that strange look and leave me in the room by myself. I figure if they were singing to me, and sounded as bad as I sound to them, I would probably leave the room too. They are just like babies....in fact, they ARE my babies. They get anything they want, because they sure watch over me. As I was saying about my trip....God has really blessed we with my driving because I am still a very good driver. I have slowed down some, used to think I had to drive at least 90 miles per hour, but now I drive 55 to 65 miles per hour. It takes me about seven hours to drive that 420 mile trip, but I dont stop, just drive non stop. My truck has made the trip so many times, if I had auto pilot, it could drive its self. Sweetie, I am going to have to go for now, but here is a thought I live by.....Never give up and never quit....quiters never win and winners never quit.....If I desire something, I surely dont mind fighting for it, no matter how hard I have to fight. When you think of the alternative I have....I believe you will agree with me. Until next time Sonia....Love and big hugs to you and yours and may God bless you. Rainn P.S. Hi Maxy, Suzy Q, Claire & Pete, Linda, Sally, Cindy h, Joycie, Alicia, barbaralu. Skip and EVERYONE else.
-------------------- May we all join together and help in finding cures for all movement disorders, and helping others in these trying times. God Bless The WORLD. Posts: 78 | From: Swamps of the HEARTLAND, just west of the GHETTOS, in THE GOOD OL USA | Registered: Nov 2006
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