Yay!! I don't have MS...I think?!?

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Yay!! I don't have MS...I think?!?

Postby conandcait » Tue Jan 15, 2008 6:34 am

Hi everyone- just an update. The new neuro at Mayo, in reviewing the 12 vials of blood taken for the myriad of tests she ran, combined with the MRI of brain, spine (thoracic and cervical) and the opthamalogist's tests have concluded that I don't have MS. So, was I misdiagnosed 10 years and countless meds earlier? She said my body could have cured itself, or the meds could have cured me, but that she was not a gambling woman. She just kept saying " I am so happy for you". What does this mean? What now? Isn't this bizarre?!?
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Postby jimmylegs » Tue Jan 15, 2008 7:37 am

GREAT NEWS! good for you! congratulations! it must feel like a huge burden lifted. do you feel healthy and asymptomatic?
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Postby lamom » Tue Jan 15, 2008 7:42 am

Wow- While I'm happy for you, that seems so horrible to have gone through the last 10 years thinking you have a life altering disease- And it seems scary to someone like me that they can misdiagnose someone for that long! I guess MS is just so unpredictable and hard to diagnose?

I think I would be confused like you are!! That IS great news though!
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Postby Lyon » Tue Jan 15, 2008 7:44 am

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Postby conandcait » Tue Jan 15, 2008 7:46 am

Hey!
I have always felt asymptomatic- aside from the fatigue, and infrequent right side "tensing up, numbness, etc.." She said that the 3 whole lesions in my brain are old, and small and could be due to anything- a virus, a fall, migraine activity, etc.. Repeat MRI in 6 mos to see what happens to my brain off the meds. ( I feel like that old commercial this is your brain on drugs...) It feels wrong and wierd what do I say to people_ "Yes, I had MS but am now cured?!?!? or I have benign MS or I was misdiagnoed with MS?!?!? Any of those answers will illicit an eye-rolling crazy woman look!!!
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Postby conandcait » Tue Jan 15, 2008 7:53 am

Hey Bob-
She does want the repeat MRI in 6 months, but when Iasked her did my dr miss this in 1999, she said well, hindsight is 20/20 and your brain MRI showed lesions- old ones but lesions the same, and we cant predict the course of MS, so . My question is why didn't he do a spinal if he was unsure? He has since retired. I have had zero disease progression since this all started when I was 17, so I don't know. She did say migraine activity can do alot of strange things, so maybe that's it. I did complain of headaches as a teen, but my mom only tells that story- I don't recall. She did also mention the cyst on the pineal gland, and my Vitamin D level is awful- 30 and should be like 80-90. Also B-12 level was low, so she wants me to take supplements. Interestingly, I used to faint as a child- dx with anemia, and while pregnant with me, mom took Vit D and b-12 shots. I am still in shock today.
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Postby jimmylegs » Tue Jan 15, 2008 8:24 am

how low was the b12? do you have a number at all?
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Postby conandcait » Tue Jan 15, 2008 8:34 am

I am trying to remember. She said they were both borderline and had an increased risk of developing rickets or osteoporosis. I remeber seeing the number 30- was that the vit d or the b-12? I thought it was the vitamin d. I can't remember, but can call and get the number if you want me to.
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Postby RuSmolikova » Tue Jan 15, 2008 8:37 am

Congratulations from Prague!
My neuro has said that the number of people who have had been told: "Sorry, we have missdiagnosed you..." has been growing up all over the world.
Have a nice day!
(I´m sorry for my poor English...)
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Postby conandcait » Tue Jan 15, 2008 8:47 am

Hello to Prague!
Your English is without error- perfect. Many thanks for your well wishes. Once the initial shock wears off, I think I am going to travel Europe with my family! I told my husband " If this isn't MS, I am going to do moething out of the box for me" My whole life was centered around the MS! What will my body be like in 30 years after taking so much interferon?! I am back at the gym 3-4 times a week lifting weights, and taking tai chi, pilates and yoga. I have always been physically fit, but now I feel as if I have been given a new life! Does that make sense? 8O
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Postby jimmylegs » Tue Jan 15, 2008 9:51 am

makes perfect sense to me! the 30 definitely sounds like it would have been the d3.

i guess you and i have some things in common! i just posted a bunch of my results under the mega D thread in regimens. my d3 was 74 and that's bad enough! so 30's really sketchy. i'm currently planning to redo the original "mega D" routine, like i did two years ago, and boost it back up to 150. i had an office job last summer and didn't get much opportunity to lie out in the sun. once or twice maybe.

at one time my b12 was lower than the lab could detect. the test was sensitive down to 75. so i was somewhere between 0 and 74. with supplementing and going back to meaty foods i have been back over 600, and my last test was 542. i try to keep it above 500. they currently evaluate deficiency based on having your blood vessels change shape. to me that is about as smart as repeatedly hitting your leg with a bat and waiting for the bone to break before you declare there could be a problem. i'm pretty curious about your b12 number, so if you can get your hands on it, let me know! :D and congrats again, what a great new lease on life.
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Postby conandcait » Tue Jan 15, 2008 10:29 am

Hey there!
I left a msg for the nurse to call me with the numbers again. I am not surprised the D level was low- I am never in the sun- I am Irish, and don't tan, I BURN!! So, I am as pale as they come. Neuro wants me to do 1000 units of Vitamin D; 500 mcg of B12 and 1000 mg/d of calcium. How do I get the B12? I think I am just going to GNC with the card and have them set me up with the supplements I need.
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Postby jimmylegs » Tue Jan 15, 2008 11:00 am

hi again, i read what the neuro recommended, and i'm going to blab on a bit here because the number 30 has set me off!

let me just say, that when i was facing all this nutrition related info, i called the drug centre at the local hospital (mcmaster, hamilton, ontario) they told me that to get someone's vitamin d3 level up 50 points fast, they give 50,000IU per day for 10 days. they specifically said to me: 'this is what we'd usually do if someone needed to get UP to your level (72 at that time)'. which i take to mean that it's what they'd be recommending to you, if you were on the phone with them yourself.

you can talk to a compounding pharmacist to find out prescription info. if you get the same liquid cholecalciferol i did, i believe it was 1 million IU per millilitre. you end up with a half a millilitre of this extremely potent stuff and you take two tiny drops per day. that should get you up to about 80, and then you'll be safer from rickets and osteoporosis osteomalacia etc. then you can see if 1000IU doses are able to get you any higher into the immune system health range.
FYI after you do a mega boost you test the result about 3 to 4 months later.

in the longer term, from what you describe about ability to spend any time in the sun, it doesn't actually sound like 1000 IU of D3 per day will be enough for you. i'd go with 3 or 4 000 IU per day, testing every 3 or 4 months for the first year to see if you're on track with the serum values of 25(oh)d3 and calcium and magnesium. the 1000 calcium per day sounds right on track. you also need a few hundred of magnesium when you're taking D3, so if you get your 1000 calcium in a blend with magnesium and zinc it will be even better.

for b12, 500 mcg per day is okay, but 1000 mcg is better. you can get an ordinary pill to swallow, but for fast results the best way is to get a sublingual that absorbs straight into your bloodstream. the pills are typically cyanocobalamin form which has the longest shelf life. the sublinguals are forms like methyl- or hydroxy- cobalamin. shorter shelf life, more biologically active.

GNC should be able to set you up with the long term maintenance of D3, ca-mg-zn, and b12 supplements but i would STRONGLY suggest that you visit a compounding pharmacist and your family doc to set up a short term super boost before you start with anything called 'maintenance'. if you want i can ask the drug info office at my hospital what their references are for prescribing at the 50,000IU level. there are also plenty of D3 abstracts posted throughout this site which you can show to your doc if you decide to try it but encounter resistance.

if you want to see the math for how long it will take you to get to the 80s taking 1000 IU of D3 per day, private message me and i'll see if i can figure out your case. my time frame was looking so lame it definitely convinced me to go for the 10 day liquid megadose, and continue with pills thereafter. and like i said, i started at 72 back then; not 30! i was going for 150 and when i did the followup bloodwork i was at 149. i believe people can normally have levels up to 250 with no adverse indications; let me know if you want me to double check on that.

i'm glad to hear you have this good news, and some measurable targets to aim for!
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Postby conandcait » Tue Jan 15, 2008 11:14 am

Okay, jimmylegs....got the numbers- vitamin d was 30. Vitamin B12 was 307- her nurse said neuro likes it to be near 900, but 180-900 was normal. So, still think those figures were okay that you rattled off??! Which, by the way, I will simply have to print off and take with me to the compounding pharmacy/dr's office just to make sense of it! :D I am an English grammar person, which seriously limits my "deciphering" ability!!
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Postby jimmylegs » Tue Jan 15, 2008 1:10 pm

hiya, that's awesome, they are fast communicators!

so yes. jeez, and MY neuro told me my b12 was fine and i don't even think it was as high as yours. i read a study where they concluded ms patients were not typically low in b12. they used 300 (or 400 depending on the units) as the dividing line. the patients tested were scattered around that number so that they could not identify all of them as one side or the other. i bet you, however, that they were probably all under 900, and i would be very interested to see how your neuro arrived at the 900 figure.

i forgot to say, if i were you i'd always take a b-complex along with any b12 supplement. the b's are a team effort :)

anyway from all my personal reading, i'm still happy with my 500s and 600s, but if you are able to pass along anything from your docs regarding why 900 is better still, i'd love to read that research too - maybe i have some more climbing to accomplish :)

here is some more info on the d3 pharmacy/doc story, so that you can read about the challenges i got through and hopefully avoid them yourself!

the main points are, take D3 not D2, and when you are having bloodwork done, the lab requisition should say 25(OH)vitaminD3 (or equivalent, i.e. 25-hydroxycholecalciferol. NOT 1,25 dihydroxycholecalciferol).

details:

after i had heard from the drug info desk at the hospital, i told my doc about their recommendation, and she sent me to a compounding pharmacist for a chat because she didn't know what product to prescribe.

so next i walked into the pharmacy and asked about getting 50,000IU per day for 10 days. he said, here are these 50,000IU pills. i said great! but when i read the bottle the pills turned out to be D2 (ergocalciferol) not D3 (cholecalciferol) so we looked further.

in the end we found a liquid D3 product in his catalogue and said he'd order it while i took the info back to my doc. which i did, and then she was able to write out the prescription, that i took back to the pharmacy. so, pretty roundabout but you get what you need in the end!

we did a followup test a couple of weeks after the initial dosing, and i did another one a few months further on, to see the longer term results. the first attempt at D3 bloodwork created this whole schmozzle about which metabolite of vitamin d3 to test.

this is complicated but i am trying to make it simple: once you have d3 in your system, it goes through three stages. one is pretty much just the input form, 2 is a sort of storage form, used as the materials for stage 3. stage 3 contributes to immune system function among other things, and is pretty tightly controlled except in certain medical conditions. interestingly, stage 3 spikes at the end of pregnancy when many people experience a remission from ms symptoms. knowing your stage 3 levels can be useful in some assessments, but it usually fluctuates very little, while stage 2 levels bounce around and tell you a better low or high level of available 'ingredients' for stage 3. stage 2 can be written as 25-hydroxycholecalciferol, alternatively 25(OH)vitamind3).

my doc had just written "d3" on that initial lab requisition, and when i heard the units on the results i knew the lab had tested the wrong serum d3, ie stage 3 not stage 2. i called the lab and they confirmed that they had tested stage 3 because of their computer default setting for when a requisition only says 'vitamin d3'.

i mentioned the issue to my doc, but she was inclined to think that testing stage 3 was the right idea anyway. she phoned my other doc to confirm, and they both initially agreed on the stage 3 test as the right one. so, i went to the other doc and sat down with all my research printouts, and after about half an hour she dug through some of her own notes (sourced from a presentation given by one of the authors of the papers i had brought) and ended up confirming that i was right: stage 2 was the one we wanted to test after all.

in the end, i had to give some more blood and we ran a second test. and now we don't get it mixed up any more!

now i am going to try to post this, for about the 5th time... very weak network here!
Last edited by jimmylegs on Tue Jan 15, 2008 5:35 pm, edited 1 time in total.
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