Intro: A Yeti In Distress. Too Long, Don't Read!
Hi everyone! :winky:
AN INTRODUCTION ---------------------------- I realize this is a long story, and it's VERY difficult to type even tonight because it's one of those nights my fingers decide to go numb. BUT ... it's long not because I care so much what may happen to me now .... I sort of don't care what happens now. Rather, it's a long post so I may help others, because I can't be the only one? I'm a Yeti, at least that's what all my friends call me. I'm an old athlete, 6-6 with size 18 feet lol. But boy, when those feet go numb .... It's a BIG deal 😂. I bring my size up only as it will show you how quickly a big, strong, and active guy can become an utter shadow of his formal self from PN, or whatever I have. (My Dx *so far* is UE and LE idiopathic PN via neurology EMG and NCS) As little as 10 months ago I was still strong as an Ox, I'd hike my rescue dogs 8 to 10 miles day. Now, I can barely walk. This is my story, and it's horrific to have lived through PN and much, much more in the last 10 months. --------------------------------------------------------------- WHEN AND HOW IT STARTED It seemed to begin almost IMMEDIATELY after my 2nd Pfiz3r vax shot. ( I am NOT anti vaxxer!) I was a bit concerned to get my first shot, on April 19th, 2021 ... but more in regards to anaphylaxis or something similar. So, once that first shot was over, and it was easy, I was all go. I could not wait to get my 2nd shot, more to protect my family than me. I got that shot on May 15th, 2021 at the hospital out patient building. 30 seconds after my 2nd shot, I tasted metal. It was as if I'd been eating a Boeing aircraft I do like to eat, so as I waited the 15 minutes post shot ... I began to wonder what the heck I ate that was metal? Heck .... Did I eat that sandwich along with the Reynold's Wrap Foil? At the end of the 15 minutes hold time, the Pharmacist who had administered it, said I was good to go. As I stood up, I recall beginning to ask him if he had aspirated the shot. ... I never got that complete sentence out, as the vertigo hit me upon standing. He said, "Hey you OK? Maybe you should hang here for a while?" Yes right, I hate hospitals and medical offices ... they remind me of organic chem class, so I was like, "Nope I'm fine, probably just some postural hypotension." I then walked ... As if I was on a ship listing left and right.... By the time I got to my car, I was fine. . Now they'd given me this cool QR code for VSafe, a way to report symptoms and how you're feeling. So I did fill that out on my Android and did my first little report on the metallic taste and dizziness ... Then drove home. The rest of the evening I was great. No problems, I was relieved to be protected! D-DAY PLUS 1 - MY. BATTLE BEGINS --------------------------------------------------- The first symptoms were tinitus and hand tremors. I had both upon awakening. I didn't worry too much, but did report them into VSafe. I also had the expected stuff, sore arm, fatigue, no big deal. D-DAY PLUS 30 --------------------- At one month out the fatigue was gone, I still had off and on hand tremors and tinnitus, but I blamed the tinnitus on the cicadas, and I scapegoated my tremor to my Keurig/Coffee addiction. H*ll, it was May. Gorgeous outside. I had yardwork and Trail Runs to do with the dogs ... And I did them, no problem. SIX WEEKS POST SHOT --------------------------------- After coming in one day from yard work I noticed the tinnitus was a lot worse, and as I took of my shoes I noticed a strange feeling in my right side of my right foot. In my head, I cued what I could remember still from A&P class and figured I may have tweaked L5 S1 ... No biggie, I thought. I'd done that before. 8 WEEKS OUT -------------------- It's vital to mention all this time I had been taking two rather well known supplements containing B6. I'd been taking them since about March, 2021. One was a popular Blood Pressure Formula, the other a Nitric Oxide booster based on Ignarro's Nobel Prize into NO2. Now, while I did study nutrition, homeopathic and ayruvedic medicine, and was a pre-med way back when ... I did NOT realize, nor care, I was logging about 5000% of the USA RDA for B6. I mean, I knew B6 was in there ...right? But big deal ... the studies I'd gone through in the 80s told me the B vitamins were water soluble, no worries. It was the lipid based vitamins that got stored. #SoWrong. At eight weeks out I had two DVTS in my lower left leg. No reason, normal coag panel, just a high d-dimer and dehydration at the ER. They sent me home with a "wonderful" new drug called Xarelto, and I began a 4 week recovery .... Or so I thought. THE DOWNWORD SPIRAL -------------------------------------- Now that I was off my feet, not working out, but still stupidly taking my daily supplements loaded with B6, I began to notice a lot of really weird symptoms. My feet began to tingle, as if they were connected to a TENS unit. One side of my face began to have some parathesias. I feared a stroke, I'd run to the bathroom, look into the mirror to see if my face was drooping, and ensure I could still smile. I could, but the was weird. I had heard reports of a lot of Bell's Palsy post vax, so I thought maybe that was starting. Things got worse fast now. AUGUST 2021 - THE QUICKENING ------------------------------------------------ I now had constant tinnitus, hand tremors, I noticed my legs also began to have tremors. My "weird face feeling" would come and go, but now there were more new symptoms. My feet numbness was spreading. It climbed my right leg, waxing and waning. My scalp began to tingle and burn at times. It was then I noticed I had problems with my right hand. Not just parathesias, but motor loss as well. By the end of the month, on some days I could no longer write with my right hand. Yet I still could drink my B6 supplements ... Like an idiot. CDC CALLS As I had been reporting to VSafe I figured it was just going to some database. But in late August a doctor from the CDC actually called my phone. The first call I thought was a scam ... So uh, he called back. 😂 He requested a VAERs report. I didn't have the energy or desire to go through all of that. By now the fatigue had kicked in. A horrid fatigue .... Worse than EBV fatigue. SEPTEMBER NOVEMBER 2021 -------------------------------------------- I finally started getting some tests at this point. My PCP was like doing nothing so I made my own appointments, out of network, out of pocket. I first got two MRIs, lumbar and cervical. Sure, some DDD and such, yet no nerve root compression .... Hmmm. I I scheduled an EMG of right UE and right LE. That doctor said, "It's too early for an EMG." By October, my symptoms traveled over to my left side. Both upper and lower. I not only had tingling, numbness, burning, etc. But also had some motor loss. Again, my PCP didn't think it was much, perhaps a pinched nervemorncarpel tunnel? We had a bone scan done for carpel tunnel and bone scan of back. Negative for ulnar, radial compression. CAN'T WALK FOR CHRISTMAS -------------------------------------------- By Christmas Eve I had every symptom In had started with, yet more. Now both of my feet would go numb, tingle. Electric shock sensations traversed my hamstrings. At times all over my body, I had sensations of like "sparks" where it felt tiny prickling, hot sparks were hitting me. As soon as the holidays were over and the doctors offices open ... I bypassed my PCP again, and scheduled an appointment with a neurologist. THE NEW YEAR It took me several weeks to get an appointment with neurologist who finally ordered an EMG NCS and a huge load of blood tests. My EMG was horrible, but all the blood work for scary stuff was normal? Normal ALA, Electrophoresis labs, auto immune, IGs ... You name it. Liver, kidney, normal. C reactives normal ... No inflammation markers ... neck X Ray, Chest, Three COVID tests, Lyme, HIV, Syphilis, all Hepatitis tests .... Normal. FEB-MARCH ------------------ My neurologist didn't have another appointment available till March 17th. I did let him know that things were still progressing. On my own I discovered B6 Toxicity .... asked for lab, but doctors said since I'd already stopped my B6 three days prior, the labs would be a waste of time. Note: None of the 3 doctors had ever even brought up B6. As it stands now, I'm still in limbo. I've now been tested for Amyloidosis, etc. I've had to fight for each test. I can't wait months between appointments and do nothing! So a brain scan, bingo .... Inflamed pituitary. I asked for a thyroid scan and a 24 hour cortisol .... Bamm ... Severe thyroiditis and literally zero AM cortisol. MY OWN LABS ---------------------- But, as I sit here and write, I still have no diagnosis. They lean toward vaccine injury, and I've finally ordered my own B6 panel. For the most part I've had to be my own doctor. Thanks to PubMed and an online version of Merck Manual, I am now off to get my vitamin B6 labs. I had no idea that high doses of B6 can cause peripheral neuropathy. I had no idea high doses can fry your thyroid. I had no idea it can tax your adrenals and make your brain so fogged you feel like a zombie. COVID AND B6 - A LOVE HATE RELATIONSHIP? The bigger question here is .... What role has COVID, the mRNA vaccines played here .... I have a hunch high doses of B6 along with a COVID infection, after it, or even just with the vaccine *might* be something researchers need to look at .... And fast! LOOK AT GABA interactions, aldosterone, etc! We already know BY can prevent cytokine storm in COVID, that's a positive .... But what IS going on between this little insidious spike protein and pyridoxine? My guess ... A lot, and it's not all good. Whether it's via mRNA or an infection, there must be some relation here. I know of way,, way too many others with new onset SFPN and PN that HAVE taken B6 during their vax period or to prevent COVID ... And a lot of them are not doing well. I am one of them. Time will tell. |
VQ, I skimmed thru your long story, thanks for posting. Tinnitus is one of the First complications from the jabs, the neuropathy issues who knows, but so many issues from the jabs. I nor my family would go near them. On the B6 you talk about I don't understand that one, I take 50mg nightly of B6 in my sleep combo. **
Hope you will continue to get healing. |
Hi and welcome to NeuroTalk.
I'm sorry you've had such a terrible time. I just wanted to mention a couple of things. The metallic taste after your vaccination is something that I experienced as well. I don't think it's in the "common" potential side effects list for Pfizer, but it is there somewhere albeit uncommon or rare. I think other vaccinations can cause that taste as well. I didn't have that issue with my first two vaccines which were AstraZeneca. I had my booster a couple of days ago and that was Pfizer. I didn't really worry about it and it went away by the end of the day. Quote:
I was prescribed Antihistamines prior to my 2nd and 3rd vaccines (after having bad reaction to 1st one) and I noticed a huge difference. I actually experience exacerbation in my peripheral neuropathy after my vaccinations. I was told that I was at risk of cytokine storm if I was infected with covid, but that's because I'm on a treatment called Immunotherapy. I hope you find some answers to your very complicated health issues. There are lots of old posts and threads here about B6 if you so a forum search. Some are in the Vitamin section. I bumped up an old thread there. More on PN forum here and also in the subforum up the top PN Tips, Resources etc.. Vitamins, Nutrients, Herbs and Supplements Advanced Search PN Tips, Resources, Supplements & Other Treatments I think we all should be really, really careful with any self-medicating including with vitamins. All the best to you. |
Hi VisionQuest.
I was thinking about your post later. I wondered exactly how much B6 you were taking all that time. Do you take B12 or D3 at all or know your blood levels? I think deficiency in those two can cause tinnitus in some people. Covid 19 Vaccines and Tinnitus - Healthline Seems it can be a very rare issue after vaccination (not common at all). I hadn't heard much about that before. |
Welcome VisionQuest. :Wave-Hello:
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Hi Vision Quest,
Thanks for sharing your story. You've had it really bad and I feel for you. I love your sense of humour. Just some thoughts ... Vitamin B6 is water-soluble as you know. It has a half-life of 25–33 days and accumulates in the body where it is stored in muscle, plasma, the liver, red blood cells and bound to proteins in tissues. In high doses it is neurotoxic. Megavitamin-B6 syndrome is predominately a large fibre polyneuropathy. This is consistent with your EMG and some of your symptoms. It can take weeks to months to rid your body of B6 from high accumulation. The prognosis is good and symptoms greatly recede for the vast majority of people. I believe coffee and and an Inulin supplement can help with ridding the body of B6. Inulin is a prebiotic. I take it myself following microbiome analysis. It may help you. Please keep us updated. Best wishes, Atty |
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