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Just back from my GP. Went back to him with new pain in my groin, (like a knife) had this for a week. Told him of the nerve pain in my top teeth and also the numbness on a small section of my lips. Funny these are all on the left side, however Pain, Tingling, Numbness and Burning are on both sides of my body, but below my knees.
All blood test are now back, and yes all clear like a lot of you guys. Yes I think he has covered everything I have seen on here, from B12, diabetes, immune diseases, toxin checks, mercury, lead so on so on, Thyroid many many others. He has been great emailing me the lab reports. He is trying to speed up my appointment with the neurologist to get a PET scan and has tried a referral to another Neurologist that might be able to get me in quicker than the 2 month appointment I currently have. I think he is concerned at how my symptom's are worsening and indeed spreading. As I am currently on 75mg Lyrica he has said to double that to 150mg per day and after a week or so go to 210mg if I'm still not getting any relief. Fun and games here and I'm fine :) just want to get to the bottom of it. A little mad however they didn't find anything in the tests, I was so sure there would be an underlying illness that would be obvious. Hoping my teaching will continue into the future but unsure with how quickly these other areas have popped up in the past week and also with how the increase of Lyrica will effect me. Sorry to vent. I'm so so aware of how worse off a lot of you guys are than me, and I'm very grateful for all your help and advice. Phil |
Phil, it is good to read that the blood tests (which sound pretty thorough to me) did not show anything of concern.
I hope that your PET scan can be speeded up. |
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Thanks, apparently autoimmune tests were clear, not sure about spinal. Is that spinal fluid or some other tests for that ?
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So what were your B12 results exactly in numbers?
Labs still report lows as normal. In US 400pg/ml is the new low .. Yours may be in Nmol and need to be converted to compare. People fall thru the cracks commonly with this test. |
VITAMIN B12 FOLATE - 30/07/15
CUMULATIVE VITAMIN B12 AND FOLATE ASSAYS Date 30/07/15 Time 00:00 Lab No 57139953 B12 Total 470 pmol/L (162-811) Comment: 57139953 Serum Vitamin BFG0012 Assay: Essentially normal BFG0012 levels, although liver disease if present may falsely elevate the level. |
Hi PHIL from Oz. I am from Oz too. Just want to let you know all those problems you say you have can actually be from the Lyrica. I took it for over 10 years and had awful problems with my health that no body could work out the cause. One day I decided to decrease the Lyrica and then learnt the hell of withdrawal. It took a year to reduce from 150mg Lyrica and 800mg Neurontin. That is when I found out the drug was the actual cause of my weird side effects like you just shared. It has been a year off Lyrica now and 6 months of all meds. My life is getting better. A helpful support group for those on Lyrica with problems is lyricasurvivors on FaceBook.
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Thank you McKenzie. I have only been on Lyrica for 1 week and I have had all the symptoms before starting the medication. Only the nerve pain in my teeth is new.
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Thanks for those numbers.... when converted to US units you are at 637 pg/ml. This is above the 400 minimum, but not by much.
If you were taking any vitamins at all, and didn't stop them you could report with an artificial high. Most of us here with PN keep our levels at 1000 or above, to ensure that the B12 is getting into the spinal cord and brain more easily. You can also show normal levels of B12 if you are not converting it to methyl form. The old unconverted stays in the blood serum and will show up in the testing. Nonconverters, have a DNA mutation that messes up activation of B12 to its methyl active form. It is estimated that 10-30% have this variant either in heterzygous (both genes missing) or homozygous (one gene missing) form. The posters here who have had this testing done have all shown some mutations. Here is a link explaining in more detail: http://doccarnahan.blogspot.com/2013...-big-deal.html To check if your B12 is actually working, there is a test besides the DNA one, and it is called MMA. If the MMA test is low, that means that B12 is working in it right form to metabolize it away. A high MMA result reflects B12 failure --hence no methylation going on. This link explains the MTHFR mutation in detail. http://mthfr.net/ This is becoming more commonly understood, as the information is only about 10 yrs old. But many doctors were not educated on this topic so remain confused or clueless about it. Your folate levels were not in your post, but if they are elevated or if your MCV is almost out of range or high, they can be clues to the fact that B12 is not working for you. |
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I have to tell you that I tried the Lyrica and it made me feel very drunk even on a low dose. It wasn't helping with the pain and increasing the dose made me incredibly dizzy and my thinking was impaired even beyond the "brain fog". I also think it made me very depressed and hopeless. This was only 3 weeks, but I knew it wasn't going to work for me. It helps many people tremendously, but every one is different. Can/did you doctor give you anything to take as needed? |
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