Y early-onset Parkinson's & MS Possibility

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pykrackersjasonzee

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Hi all, I came to this group 6 years ago after dealing with rhythmically twitching thumbs, perceived weakness, imbalance (etc+) for months. My internist told me it was all in my head, psychosomatic, a result of stress. We did blood tests, a Lyme test, 2 EMGS, a MRI and nothing. "Normal". My grandmother had early onset Parkinson's, and as a 23 yr old woman MS was a possibility, and let's not excluded the dreaded 3 letter diagnosis that only time would tell. These things loomed over my head, not feeling I had a concrete diagnosis to my symptoms. I always knew something was wrong, I felt it. I was chemically stressed, imbalanced in some way. Convinced by nearly everyone I was crazy, and starting to believe it myself. I was put on Zoloft and gained 30lbs in 3 months- still twitching. Eventually, as I grew to accept this BFS diagnosis, I stayed away from this group and WebMD (indulging in both made me worse) and tried to live healthier in general. The healthier I tried to live the more the twitching subsided. I started taking vitamins, got off all the prescriptions, twitched through yoga, got a fantastic dog who is my partner in the great outdoors, got married (to the man who stood by me through the madness)...Now that my husband and I are talking of starting a family, I decided to go make an appointment to go to a doctor of functional medicine, someone who looks at the big picture, because deep down I still feel like there is something off with me, something hormonal, endocrinogical, chemical, I don't know. Preparing for this, I've requested all my old blood tests. Flipping through them, trying NOT to reminisce, at the bottom of the pile are my tests from '05. Something catches my eye. An asterisk next to a result, my B12. While sited as normal at 218 (on a scale 200-1100) is a note from the lab:"ALTHOUGH THE NORMAL RANGE FOR VITAMIN B12 IS 200-1100 PG/ML,PATIENTS WITH VALUES LESS THAN 300 PG/ML,I.E. "NORMAL", MAY EXPERIENCE UNEXPLAINED NEUROPSYCHIATRIC OR HEMATOLOGIC ABNORMALITIES DUE TO OCCULT B12 DEFICIENCY."Hold on, WHAT?!?! Are you f*cking kidding me? I'm on the verge of madness now, crying with both anger and relief. My dismissive, awful, internist didn't read the fine print. I wasn't crazy, I just needed to take my vitamins. Seriously? What I ended up doing in an effort to be healthier, was actually me self medicating. I suffered emotionally, psychologically, physically for YEARS because this woman glanced over at "normal" levels. Truthfully, I haven't been the same since. Even though the twitching lessened (not gone) I still feel weakness, fatigue, migraines, "buzzing" and the FEAR. Starting today I'll take B12 in addition to my multi, maybe that'll make the rest go away, but still, I can't believe this. I'm having waves of peace and anger, relieved to know it wasn't all in my head or something more ominous, angry she didn't call attention to this and jumped to just dismissing my symptoms. The only reason I got to the neurologist was because I swore to her something bigger was at play here. She was glad to pass me off. Can anyone tell me what to do? I feel robbed of the last 6 years, I feel violated by the unnecessary tests and drugs. I feel like I was driven insane by this. Do I report her? Make an apt and confront her? Sue? It's not like I lost a limb in surgery, but I feel so wronged. Like I need my pound of flesh. This is fresh and I'm sure I'm overreacting, but am I? I don't think anyone else besides you all would understand.I don't know the moral of my story, take from it what you will. At 23 I was uneducated and naive, taking the doctors word as absolute truth. I don't think B12 deficiency is the answer for everyone, but who knows, it's worth a blood test if you're still seeking an answer. I truly believe there is something to this condition that the medical community can't (or won't) figure out yet. Just make sure to ask questions, get a second opinion and be your own advocate.Wishing you all very well,Kris
 
Kris I'm so glad you feal releived from your results. But mabye I need to read it again but do you think all this time (twitching) ect was just because of a viatamin B-12. I'm deficient in Vitamin D and Potassium and I'm still twitching. I think there are many reasons why we all twitch or have BFS or whatever it may be. Stress, Diet, Vitamins, Virus, having a baby, work, LIFE! Thanks for posting! Ashley
 
Hi Ashley, the twitching always stood out to me as the scary symptom, neuro-muscular and not related to the many many other generic daily ailments I've had for years. Putting them all together now the B12 deficiency makes a complete diagnosis, that makes total sense, so yes, I think the B12 was it for me. I also believe the stress and anxiety acerbated the muscle spasms, and made me feel crappier then usual.For your reference, here are some of the mild symptoms:Symptoms of vitamin B12 deficiency include pale skin, weight loss, constipation or diarrhea, bleeding gums or sore, red tongue, weakness or tiredness, nausea or lightheadedness, poor muscle coordination and balance; peripheral neuropathy --- characterized by twitching, tingling or numbness in the toes and fingers; impaired mental clarity, i.e., forgetfulness, confusion, difficulty concentrating, impaired judgment and control of impulses; tinnitus, or ringing in the ears; and dementia.
 
I would just wait ans see how you react to vitamin B-12. I know from my own experience that many times I thought that I discovered the cause. Unfortunately, Ain't happened :rolleyes: Still, Wish its your answer!
 
Yeah there isn't one person here who I think has ever pinpointed the exact "cause". I doubt that just adding B12 to your diet and reporting your doctor is going to change much. Remember, part of the cure of dealing with BFS is learning not to dwell or obsess over the small stuff. Just think back to how happy you were and how well you were doing before you read that. Just try the B12 and go back to that happy place.
 
Many people with B12 deficiencies need shots in order to make their levels come up. I would talk to your doctor and see if you can get the shots done. B12 is actually a common problem, but Mario is right that getting the shots might not cure the problem.
 
Been there done that, I thought all my symptoms were B12 deficiency too. I took sublingual B12, which does work. My levels shot up over 1000 and the symptoms remained so I would say that you better see first if that really is the problem, I hope for you it is but mine was not.
 
My b12 is same as yours. Low 200's. I took suppliments for months and no changes. The only time I don't twitch is when I'm not stressed.
 
One thing that can cause low B12 levels over time is acid reflux medicine. Your stomach can't absorb the B12 if you don't have enough stomach acid. Even some people who don't take reflux medicine but have low stomach acidity can have the same problem.
 
i was a vegetarian for 10 years and tested very low in b12 (147) three years ago. get monthly injections since then and take sublingual natural b12 but no changes in my bfs-course at all.
 

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