Dust settled..... NOT MS.... Improvement continues

My second MRI with contrast and a spinal tab cleared me if a MS diagnoses. The demylemation had not changed from previous one (5 weeks before). The spinal fluid only had an elevated protien for neuropathy. My brain fog and anemia have both nearly come to a halt after starting the genetric Metanx last month (took anout two weeks). My neuropathy is also decreasing. My internist prescribed me an injection (1000MCG cyanocobalam) weekly for life! I have felt good for several weeks (minus recovery from the spinal tab- horrible). Now that the fog has cleared and the pricks are subsiding, I am beginning to realize how terrible I felt. I am rushing around now catching up on so much that was left undone for the last year. I have another MRI in a year. After over a year of bouncing around between doctors after symthoms started, I am grateful to be at this point. This group has been INSTRUMENTAL in my understanding of my B12 deficiency. Thank you all, I am keeping my membership inthe PA society and keeping up with this group!

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  • Very pleased to hear your good news . Yes the PAS forum is fantastic ! Very best wishes to you .

  • Hi xyz011. This is such good news. So pleased that you are beginning to recover after so much ill health for so long.

    Good to know that you'll be keeping up with us...I'm sure folks will be keen to hear how you get on...and tales of success / words of encouragement are especially welcome to all here.

    Very best of luck for a continued recovery 😀

  • So very pleased you are making progress xyz011 - I've been on cyanocobalamin injections for 45 years so I guess they're working :)

  • Hi xyz011

    It is so good you're feeling so much better. Hower, I am fairly new on this site and have just really started reading posts and at times replying. So, were your demyelination and neuropathy caused by B12 deficiency, and how did you managed to get a clear diagnosis? may I also ask you what symptoms your were getting with your neuropathy, was it in your hands/feet... problems with urine/bowel movements, clumsiness, lack of balance, tinnitus, foggy head and strange noises in head (not voices!!)?

    Looking forward to hear from you, and much luck with continued improvement.

    JGBH

  • I mentioned the pricks in my fingers to my GP in Sept. 2015. He referrred me to a neurogists (took 3 months). He then did an exam and extensive blood work. He tested my B12, MMA (blood serum not urine), and foltate (plus much more)! The B 12 came back as 214 (low normal) but the MMA was very high (800 ?? Have to look) and folate was more than 20. He put me on injections for one a month and one a week for 4 weeks. Within two weeks I felt wonderful. I was had a body ache and brain fog as well. I thought the ache was from excercising. I had no idea about how bad the brain fog was unitl I was out of it (hence brain fog)! I had a follow up in Feb and he said to go to my GP if symthoms returned because he was moving in June. The symtoms started to return in April (pricks). I was very busy teaching at the time and then saw my GP in May. I got one injection in the office and was referred back to the neurologist. I saw him 3 days before his relocation. He gave me more test which included the anti body partitial cells and intrintist factor tests. Partitial (not sure if spelled right) was over 700 and IF negative. I was referred to an internist which took another two months. In the transition, I had only the one shot in May for four months. All symthoms returned and got worse and worse, and I had NO energy. When I saw the internist I was given one injection a week for 12 weeks which was not enough. I BEGGED for more and was told to just hang in there and wait. I did a follow up with a PA in the neurologist office. She gave me a cognitive test during my brain fog (not on purpose just my state of mind)! I scored poorly so she ordered an MRI, hence the demyelation was discovered. The MRI lead to the second one with contrast and the spinal tab to rule out MS. In the mean time I saw the neurogist that relocated. He retested me OUT of brain fog AND that found that I was not cognitive deficient. My brain was clearly by then. He prescribed the metanx which brought me further out if the brain fog, decreased my neuropathy and anemia. By this time I had shots for several months and was coming out of it. I saw my internist the day I had my spinal tab. It decided then to keep me on weekly shots for life rather then deduce to one a month (was his plan). I Think the MRI demylemation scared him. I had tons of blood tests and extensive family history questions to rule out that the white matter disease (demylemation) was NOT caused by something else after the first MRI and poor cognitive test. The take home message..... NEVER UNDERESTIMATE the power and importance of B12! My medicial records say B12 deficiency rather than PA because IF test was negative (assuming). As you will learn on this group that the test is wrong 50-60% of the time. My MMA and antibody tests were the deciding factor along with my symthoms and response to injections.

  • Thank yo so much. Do hope the injections carry on helping.

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