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AngelManFL

Active member
Joined
Sep 30, 2007
Messages
98
Diagnosis
11/2007
Country
US
State
FL
City
Tampa Bay Area
Hello to all, I thought I would start a new post - I felt guilty that the first one is so long, but very very grateful for all of the outreach of caring, prayers and that comforting feeling of the fact you all "know" me and the challanges that we all face together.

My last visit at the local ALS Clinic they took a lot of blood work and my B6 levels were extremely high. The Dr said that this could cause neurological problems but he didn't know why or how?!? Which niether one of us believed - we left there with the feeling he knew something and just refused to tell us. We tried to get him to answer more questions but he just wouldn't - kept telling us over and over that I needed more study at the Mayo clinic - that was his answer to every question that day.. extremely frustrating answer! We tried to ask him if there was something in the body somewhere that broke down vitamin B6 or what the process was and why and how could mine possibly be so High? He answered every question with the same answer.. That was now ten days ago(12/05, my original appt date at the Mayo that this man asked me to cancel!) and we have had no luck searching the internet on this issue.

He said normal was below 14 and that mine was 89. Of course I have no idea what that means and there is a million and two issues on the web... I was just wondering if anyone else has every heard of such an issue or how the body breaks it down? And how does could this relate to ALS or not relate at all! My diet consist of only two nutrition shakes a day - THAT'S IT - and some days I can only get down one! I don't take any vitamins, I only drink water or Gatorade with 'Thick-It' in it - none of which he did tell us could cause this issue... There is a vast amount of knowledge and experience here and I was really hoping that maybe someone here has faced a similar issue? Jan 21st is my next appt at the Mayo - we call everyday hoping for a cancellation due to the holidays.. As you all may know by now Patience is not one of my best qualities when it comes to waiting for Doctors!

Up until ten days ago I and evry one I know always believed that if your body did not need some vitamin you were taking - your body released it in your urine(yellow, orange or even green pee!).

Just hoping you someone could help us in our search for answers...
Thanks,
 
2 cents- forwhat it's worth...

I am not a PALS, but I use an energy drink that contains 300% 'RDA' of B6 and drink about 3 a day. Each drink also has 4900% B12. + 100% B3, B5, folic acid...

I was told that these levels were safe because what your body does not need will be passed through the urin - as you said. These energy drinks have knocked out "cold virus symptoms" and are a better alternative than 6 diet Pepsi's a day.... I know there are some of you cringing right now - Just exposing my habits to point out the high B6 would only rais the Question, why aren't you 'passing' this?...
 
Hi Don,

the only thing I came up with high vit b-6 it causes:
anxiety
palpatations
tremors
tachycardia (heart beat over 100 mininutes at rest)
sweating
 
Thank you SWMN and Crystal. I have none of those symptoms you listed... I just can't find anything on the web helpful either - the ALS Dr was stumped and couldn't answer either - nor my Gp.. It just seemed odd for it to be so high - hopefully someone will come up with something. especially the Mayo clinic.. but that's not until the 21st of January... I tried the search but it wouldn't exept "B6" only 2 characters. There has to be something out there on the web - I'll just keep at it.. if I'm one thing it is determined! (although some may call it stubborn) :)

Thank you for the input.. it is very much appreciated.
 
Thank you Jeff!

Jeff - you hit the jackpot! that is exactly the type of information i was looking for! Somehow the word Pyridoxine completely escaped my attention, I googled it and tons of information surfaced - including high levels of toxicity can mimic ALS! I will at least be able to print these and bring to my doctor and the Mayo clinic..

Thank you sir - may God's light shine down upon you! :-D
 
Geeks RULE!

err...

I mean you're welcome :mrgreen:
 
Great!

Hi Don!

Glad you are getting some good information!

May your determination and stubborn-ness take you far!

My concern, too was maybe a liver/ kidney problem as I have few of the symptoms from high levels of B6 - (..other than my normal anxious self ..heh...)

Best of luck as you head to Mayo -
{{Holiday Hugs}}
 
Merry Christmas - let His Love Shine...

God Bless each and every one of, you are my second family and I wish all of you a Wonderful, Happy, Family Fun-Filled, Gloriously Merry Christmas! I have come to love and adore all of you - Irma, Gina, CindyM, Crystal, Super AL, Jeff, SWMN, Pat and any and everyone whose helped me, encouraged me, advised me or prayed for me - you all will be in my heart, my thoughts and my prayers today - may we all make it through probably tired and exhausted by the end of the day - but let's pray it is a wonderful Christmas for all us.. May God bless all the CALS who work so hard to make it so wonderful us.. Merry Christmas!

God Rocks and Rules! :-D
 
High B6 too!

After going to many doctors complaining of various neurological problems, a neurologist had me go for blood work to test my B6 level - it came back TOO HIGH TO MEASURE! I asked the doctor what to do and he said to stop any B6 suppliments. I told him I was not taking any B6 and was not eating or drinking anything that was high in B6. He sent me back to have my B6 levels tested 4 more times over 4 months - results 60, 48.5, 43.5, 38.5. He said even though they were coming down, they was still well over the max of 26 and was likely causing my neurologic problems. However, he did not have any explaination since my liver and kidney tests were normal. He advised me to go to the Mayo Clinic. He has no contact at Mayo, so I would have to call there cold and go from there. I thought I would google "high B6 levels mayo" and see what I got. I got your post.

Can you update me on your situation? Who did you see at Mayo? What did they do/find? Anything else would be greatly appreciated!
 
Hi! I stumbled onto your posting because I just found out today that I have high levels of B6 (Level of 41). I go to an Integrative Medical Specialist and she said that it COULD be Enzymopathy of Polymorphism of B6. This is apparently a genetic condition prevalent among people of Scots-Irish decent where the enzyme is too big ("poly") and misshapen so your body is unable to convert B6 into its' active form, P5P. Glitch with the enzymes so your body can't activate it so your B6 remains high. Right now this is just a theory so I hit the web looking for more info. I just wanted to throw out this theory to you in case it might be something for you to consider as well. Unfortunately, I'm having trouble finding info I can understand so far, but I've only just begun my research so I'm just sharing what I learned today. I hope you're able to find something that will help you. I've turned to Integrative Medicine b/c I was tired of getting that lank stare from my conventional doctors. Blessings to you!
 
Hi Alicia, I just wanted to say that the posts before yours are pretty old... in case you were hoping for one of them to respond.
Very best wishes,
Ann
 
Has anyone heard how AngelManFL made out at the Mayo Clinic back in Jan 2008?

I still have chronically high levels of B6 and my neuropathy is getting worse. My local doctors have basically given up trying to figure it out. They won't even test me for it anymore. They just tell me to go to the Mayo Clinic. Unfortunately, I have been unemployed for a year and don't have the money for a trip to there.

I appreciate AliciaZ's recent post. I'll definitely look into Enzymopathy of Polymorphism of B6.
 
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