10 years ago i started having tinnitus.
6 Years ago my heart started having a lot of PVC's(Premature Ventricular Contractions).
2 Years ago i started having backstapping pain between shoulderblades combined with difficulty swallowing. And from there the neurological symptoms came in one long line...
Cold hands and feets.
Periods with extreme hurting tongue
Tinnitus getting a lot worse
Extreme hip pain (bursitis) I have got 3 steroid injections in the hip - they help
Diff. Swallowing getting a lot worse
Pins and needles (not all the time, but the way i feel it, i wake uo a lot in the night, with extreme pins and needles in the arms, hands and legs/feets. Also, like 3 years ago, i had no problem lying in my couch, supporting my head with my arm/hand. if i do that now, or lay in any other position where legs og arms are bend for more then 30 seconds, i det extreme pins and needles.)
Off course i went to my doctor 2 years ago, when the symptoms really took off, he send me to all kinds of specialists, and i have been checked with 3 MRI scans, 3 Gastroposcy, 24 hour ph in esophagous, several swallowing rutines , and it all comes out negative - they can not find anything wrong with me.
Off course i have been googling like a maniac, and suddenly 2 moths ago i stumbked accros this difficulty-swallowing.com/ . And this site was the reason i started investigating B12 deficiency and swallowing disorders. I have found numerous scientific articles describing this. Actually also folate, biotin and B1 can lead to swallowing difficulties. Then i found out that most(if not all) of my symptoms could be related to B12/folate Deficiency.
I then started to look at my bloodwork. My cobalamin is normal but low. My ferritin is very low 30 mcg/L, Hemoglobine is low 8,4 mmol/L, Zinc is low 9,6 mmol/L, magnesium is low 0,77 mmol/L - But my MCV and MCH is both elevated beyond reference. A fellow suffer explained to me that low ferritin, would make bloodcells smaller, and that the combination with large bloodcells(Elevated MCV and MCH), even though ferritin is right at the bottom, really suggest a massive B12/folate depleetion, especially with all of my neurological symptoms.
Do you agree ?
The development in my bloodwork from 3 years ago - up til now, is that 3 years ago MCV and MCH was normal. They have been taken 4 times since then, and for every month the values just get bigger and bigger. Tha same is for ferritin and iron - they were normal 3 years ago, but for each test, the numbers for ferritin and iron just gets lower and lower.
After reading a lot about this, and getting comments on facebook, i thought, that it all added up - pointing to a B12/folate deficiency. I talked to my doctor, who did nothin else but looked at cobalamin, and concluded that my B12 status was fine!
I rushed home and ordered all the things i needed for selfInjecting, including Hydroxo, methyl and adenosyl and folate, all for injecting.
I have only been injecting for 14 days, alternate days, wich means i have gotten 6 inejctions, 3 hydroxo and 3 methylcobalamin. For folate i have been taking methyl folate oral supplement 800 mcg a day. I have also been taking iron and zinc and magnesium.
Im in doubt how much B12 to inject. In a facebook group some people inject 1000 mcg of hydroxo every day, and some has done that for 10 months. Some even inject 2 times a day. And others only weekly.
I find myself lost, as my doctor does not support this - so how do i proceed ?
At what frequency do you suggest i take injections ? Hydroxo/methyl/adenosyl ?
Is methylation something to worry about ?
Some reccomend 5mg of folate every day (not folic acid), and others swear to 800 mcg of methylfolate. What do you think is the best for speedy recovery ?
I have also ordered TMG from Jarrows, together with methyl sublingual 5000 mcg.
I have also ordered biotin in megadoses 100 mg per tablett, because i read something about basal ganglia disease, wich lead to swallowing difficulty, and should be treated with 400-800 mg of dayli biotin and 300-900 mg of dayli B1.
By googling it seems that deficiency of almost all B vitamines can lead to swallowing disorders. Should i supplement with complete B complex ?
Sorry for the long post - i hope to get a lot of good advices, and if anyone can relate to swallowing problems and periods ef extreme stabbing backpain between shoulderblades, i would be very glad to hear about it.
God bless us all.
Cheers from Denmark