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Old 03-15-2008, 10:57 AM #1
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Join Date: Dec 2006
Location: North Alabama
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15 yr Member
jackieinbama jackieinbama is offline
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Join Date: Dec 2006
Location: North Alabama
Posts: 11
15 yr Member
Default B12 deficiency- still having problems!

I was diagnosed in May '05 with B12 deficiency (pernicious anemia). At dx my level was 79. I was very ill. Lost my voice completely for several months. Muscles ached to the point I was afraid to move. Had brain fog, very dizzy. Shortness of breath, tightness in chest, fatigue so bad all I could do was move from bed to couch. Numbess in hands. Since dx my levels have been above 2000 for over a year with oral supplementation and monthly injections.

My problem is that even though I am much improved in some areas (hand numbness, dizziness) I am still having alot of issues with all the other sx. I have "good" days (which are few and far between) where I feel like I could run a marathon and "bad" days where it is a struggle to lift wet laundry from the washer to dryer. My muscles ache, I get hoarse, tight in chest, winded, very fatigued, headachey, brain fog.

Also, in January of last year I had a very early stage breast cancer with lumpectomy and 5 day targeted radiation. I was then put on Tamoxifen which is an anti-hormone since my cancer was hormone receptive. The Tamoxifen seemed to amplify my fatigue and I had a never ending hot flash that just wiped me out. I went off Tamoxifen in December and have had time for it to get outof my system and with the exception of no more hot flash, I feel about the same.

My oncologist has set me up to see a neurologist at UAB Kirklin Clinic in Birmingham next week. I have seen two neurologists locally as well as a cardiologist, pulmonologist, endocrinologist, rhuematologist, gastroenterologist, 2 ENT's (all together 13 docs and specialist) who all don't know what to do with me. I have had extensive bloodwork which was sent to Mayo clinic. I've had numerous scans and x-rays, endoscopy, colonoscopy, bone scan, heart catheter, (all showing nothing except fatty liver), ect...

Sorry for long post, but am at my wit's end. I also have hypothyroidism and high blood pressure. Have gone off all medications before to see if anything was going on there. Can't work and am awaiting on appeal with SSDI. Hard to get without a true diagnosis.

Anyone still have major issues like mine even after B12 replacement? Help!

Jackie

Last edited by jackieinbama; 03-15-2008 at 11:50 AM.
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