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General Health Conditions & Rare Disorders Discussions about general health conditions and undiagnosed conditions, including any disorders that may not be separately listed below. |
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11-01-2009, 11:47 PM | #11 | ||
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Senior Member (jccglutenfree)
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900 is a good b12 level... but you need to be sure it STAYS that high.
I'm not really sure how fast your B12 level could come on 5000mcg if taken daily, or hit and miss. That is a high dose of B12. After three months of 1000mcg cyanocobalamin I went from 294 to 650, and in another three months I was over 900. If you told me you'd been taking 5000mcg of methylcobalamin B12 for one month solid... I'd think it possible you could have raised your B12 level from low to that high due to supplements...especially if using methylcobalamin. I'm not sure if it could have come up that much if you were only taking it hit or miss. Nonetheless, keep on taking it regularly. You may not need 5000mcg daily to keep it up, but I would be sure to get at least 1000mcg daily at this point to keep it elevated. B12 levels can raise quickly, and methylmalonic acid can normalize quickly once supplementing. Symptoms take time to resolve. If you maintain your high level... at least you will know you have that base covered. Please... keep it up. If after six months of regular supplementing you have not improved... then B12 may not be the problem. Until then, assume it still might be... and keep looking at other possibilities. Any doctor can order the blood work to check for gluten sensitivity, although GI's somewhat "own" celiac disease. The problem is that gluten sensitivity can cause neurological problems without affecting the gut... and GI's focus solely on the gut disease part of it (celiac disease). One of these days I hope neurologists will take ownership of the neurological presentation of gluten sensitivity, because the testing can be a little different than it is for celiac disease. Antigliadin IgG, the least meaningful in terms of celiac disease, is the most meaningful when it comes to gluten related neurological disease. There may be some other tests, too, but antigliadin antibodies are the best starting point. I would try asking your regular doc, or your neurologist, or any doctor next up on your list... that you would like to be tested for gluten sensitivity by use of antigliadin IgA and IgG antibody (NOT deamidated gliadin antibody). I list the exact tests and explain them here: http://jccglutenfree.googlepages.com/diagnostictesting You might also consider self testing via Enterolab: http://jccglutenfree.googlepages.com...ndstooltesting I would definitely pursue the Lyme Disease testing (via http://igenex.com/Website/ ), if nothing else shows up. I don't know much about it really, other than I know a few people who have tested postive and been treated for it. And I've know several who had B12 deficiency, gluten sensitivity AND lyme disease! All things had to be dx'd and treated before they finally got well, so keep in mind you could be looking at a combination of things causing your symptoms. I know Igenex is the lab for Lyme testing, and this is the best website: http://www.lymenet.org/ Let me know if you have anymore questions about the gluten sensitivity testing. Keep on searching for answers... they come much more quickly when you do... even if seems to take a long time. Cara
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"Thanks for this!" says: | binx (11-04-2009) |
11-02-2009, 09:09 AM | #12 | ||
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the onset is telling me injury....but i cant think of any other testing....hmm perhaps a PET scan.....if you have torn something in the vasculature, but it is no longer bleeding, it might not show up on an MRI......think carefully about you activities in the hours/days prior to this happening, looking for a provoking/percipatating event..... good luck |
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"Thanks for this!" says: | binx (11-04-2009) |
11-03-2009, 01:54 AM | #13 | |||
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For ten years I have struggled to deal with a condition which is secondary to a primary issue. It is rare, sneaky and very tricky to diagnose and nearly impossible to treat. I find only the self- education and advocacy will support my life and avoid going into crises. I cannot add much to what has already been offered except to suggest looking into nutritional deficiencies, along with the importance of B12 deficiencies. If you have digestive issues, there might also be malabsortion issues. Have you ever taken a course of anti -fungals? Some connections are found with powerful medications that can manifest in long delayed symptoms. At any rate the process is one of hurry up and wait, for lackadaisical outcomes from the average doctor. Few doctors are wired for unusual presentations. Knowing when it is futile with one Dr., leaves your energy freed up to keep going to try others. I have 15 doctors, one for every part, and have to do a bi- annual follow up with each, as my own case manager, to make ensure they are all on the same page. Becomes a full time job, along with a refusal to identify with the symptoms. A difficult dance indeed. Had to refuse the common labels which only make doctors feel better. Also their refusal to believe the symptoms are real, because I look fine. Mark your symptoms on a calendar is one way to validate and record the often cyclic patterns. Hang in there and trust your process and love yourself all along the way, no matter how it looks to others. Avoid comparing, no one has the same path. You are unique and deserve to be seen as an individual rather than a bundle of symptoms. Find an experienced therapist, which is essential to avoid too much reliance on your partner and avoids 'caregiver burnout'. The best therapists I have found so far are oriented toward mindfulness training, as in Buddhist practitioners or mediators. If someone is resistant to the reality of feeling powerless to this process, then the feeling tone of being rejected, will inform you that they have not done this work and cannot really help you. As with any helping profession, move on, it is not about you when the helpers cannot help, or about you when the helping hurts. Unless you stay in a toxic situation despite your instincts to the contrary.Trust this red flag if it shows up and take whatever steps you can to heal the emotional process of chronic debilitating symptoms. This is an extremely valid learning process deserving of compassion no matter what else anyone thinks. honor your process and it will inform you of what you need to learn and do to help yourself. i am a much better human being as a result of all of this and have become a help to others I meet along the way. The world needs heroes on their quest who can carry on. Do refuse to give up. Always!! Best wishes toward solutions and resolutions... Linda |
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11-04-2009, 01:08 PM | #14 | ||
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Junior Member
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i appreciate everyone's replies so much. it helps with the sense of isolation that has become so overwhelming to me.
tinglytoes: i appreciate your insight into some of the more profound aspects of dealing with illness. i have indeed located a counselor who is very focused on mindfulness and has been helping me to cope with what's going on in my life. i had to find someone since, as you indicated, my husband has been on the receiving end of so much of my stress, on top of dealing with his own concerns about me. as supportive and wonderful as he is, it was critical that i have another outlet to spare him. you have a very wonderful outlook, and i think it is important to maintain that to survive. i am also scheduled to meet with a nutritional specialist next week who can hopefully give me some feedback as to modify my diet to better cope with my physical symptoms as well. it can only help at this point. pabb: i agree--it does seem like my symptoms presented as a result of an injury of some kind, but the only thing i had done up to that point was care for my then 3-year-old. in addition to the brain and c-spine MRIs, i also had a CT scan and later an MRA to check for cranial vascular abnormalities as well. everything has come back normal with the exception of my cervical disc bulges and herniation. after doing a bit more research, i do have many of the symptoms of chiari malformation. in fact, that is the only diagnosis that actually seems to fit. i have seen 3 neurosurgeons and a neurologist--in your opinion, is it possible that all of them along with the radiologist who interpreted my scans missed it? if so, i will try to find another dr. who is a chiari specialist as you suggested. thanks again. it's a relief to have found this forum. Last edited by binx; 11-04-2009 at 01:11 PM. Reason: added some details |
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11-04-2009, 08:34 PM | #15 | |||
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