New - undiagnosed - scared...

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Re: New - undiagnosed - scared...

Postby lyndacarol » Wed Dec 09, 2015 12:50 pm

kw202 wrote:All right, I have my B12 result, and today I had a follow up appointment with my neuro to go over results of my newest (with contrast) MRIs. My brain MRI has a couple of lesions, including the "Dawson's fingers" he said is characteristic of MS. (This is in addition to other lesions on my cspine and tspine). My spinal tap results aren't back yet but he advised me to prepare for a MS diagnosis. And he put me on a course of oral steroids, hoping to speed up my recovery from the leg heaviness/numbness I've been experiencing.

My B12 is low. I stupidly walked out of his office without a copy of the results, but he said my B12 was around 200 (on a scale where I think 200+ is normal); he told me people with neurological symptoms shouldn't go below 600, for what that's worth.

I'm going to see my GP tomorrow, it's supposed to be for a B12 shot - but maybe first I should ask her to order more B12 tests. I asked my neurologist today if he thought my lesions could be caused by B12 but he waved me off because he said B12 deficiency "doesn't cause brain lesions." So I'm back here, asking for some advice.

IS this true? Are supplemental B12 tests just worthless at this point? If not, what other tests should I be asking for related to B12?
At 200 pg/mL, your B-12 level is definitely low. In Japan, any B-12 result lower than 500 pg/mL is considered a deficiency and is treated. The ranges at US labs are set too low.

Your symptoms are neurological: numbness, pain, lesions, dizziness (vertigo), balance issues. Your B-12 level was around 200. Your neuro told you "people with neurological symptoms shouldn't go below 600." The situation seems quite clear to me.

If your GP plans to give you a B-12 shot, any further testing should be done FIRST before a shot. Any B-12 testing done after a shot will be unreliable.

Your neurologist was incorrect when he said that B-12 deficiency "doesn't cause brain lesions." B-12 deficiency absolutely can cause brain lesions!

When you see your GP tomorrow, ask for a serum homocysteine test (if the results are very high, it indicates that your B-12 level is probably deficient). Also, ask for a methylmalonic acid test – like the homocysteine test: if the results of an MMA test are high, your B-12 level is absolutely low.

If you are to receive a B-12 shot in a US doctor's office, it is probably in the form of cyanocobalamin (which is not easily used by the body – it must be decyanated first; cyanocobalamin is the cheapest form of B-12). Either the methyl-B12 form or the hydroxo form is easily used by the body. Hydroxo-cobalamin is available at most pharmacies.
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Dec 09, 2015 2:04 pm

Is there any point to the other tests if I know my B12 levels are low from the initial test?

I'm just wondering if it makes more sense to try to boost up my B12 fast -- I wont see my MS specialist until early Jan., so that's the earliest I could be put on a MS med. In the meantime, I could be seeing if I can have some effect with B12 supplemenation alone... though, maybe that wouldn't be enough time to tell.
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Re: New - undiagnosed - scared...

Postby lyndacarol » Wed Dec 09, 2015 3:23 pm

kw202 wrote:Is there any point to the other tests if I know my B12 levels are low from the initial test?

I'm just wondering if it makes more sense to try to boost up my B12 fast -- I wont see my MS specialist until early Jan., so that's the earliest I could be put on a MS med. In the meantime, I could be if I can have some effect with B12 supplemenation alone... though, maybe that wouldn't be enough time to tell.
If your neuro or GP is following the lab's standard range and believes that 200+ is normal, they are unlikely to prescribe treatment. In order to prove that your level is actually low, you may need high serum homocysteine test results and high methylmalonic acid test results – the evidence from the tests may convince them to treat you. This will be justification for their actions.

Waiting a month to see your MS specialist (a neuro) should cause no problems; this is not an acute situation for you. Besides, a specialist is more likely to find a problem in his specialty area and want to treat that rather than a problem of nutrient deficient.

I would be more inclined to work on the B12 possibility with your GP – she could be more open to issues outside of neurology. See your GP, discuss B12 more with her, request the Hcy and MMA tests; document the need for B12 treatment before you simply start self-treatment with B12 supplementation. Your GP may want to find the reason that you are not adequately absorbing B12, or she may prefer to refer you to a hematologist for further investigation.

In any event, it is generally accepted that B12 injections work more quickly than oral B12 tablets.
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Re: New - undiagnosed - scared...

Postby chenman » Wed Dec 09, 2015 3:44 pm

kw202 wrote:Is there any point to the other tests if I know my B12 levels are low from the initial test?

I'm just wondering if it makes more sense to try to boost up my B12 fast -- I wont see my MS specialist until early Jan., so that's the earliest I could be put on a MS med. In the meantime, I could be seeing if I can have some effect with B12 supplemenation alone... though, maybe that wouldn't be enough time to tell.

The blood for tests should be taken before B12 substitution. B12 is non-toxic, there is no risk in taking it, and your level is definitely rather low.

Homocysteine and MMA = methyl malonic acid values allow a valid judgement. There are subligual tablets with several milligrams available: only a very small part is absorbed (i.e. across the mouth ?mucosa), but it is a tested and valid way to help increase your B12 quickly, in parallel to shots.
-------------------------------------------------

B12 is involved in over 100 different biochemical reactions in the body. There is this single disease called ?funicular myelosis (a demyelinising degenerative disease of the spinal cord), but that is only the tip of an iceberg of mostly poorly known / investigated disorders, many of them neuropsychiatric.

Of course B12 deficiency and "MS" (or a special form of late neuroborreliosis, as I see it) are not ?mutually exclusive: you can have "lice and fleas". B12 deficiency may aggravate other neurological disorders. I guess nobody really knows the details. (B12 is cheap, no drug company will do research on it, I guess. And "public health" may not be aware of the severity of the problem...)
There are a number of books available, sounding ?"alarmist", the statements should be seen with caution - but the "info" given by your neurologist certainly is not valid either.
--------------------------------------------------

Did I post the link to the preliminary results of the Canadian double-blind minocyclin study in "CIS" = clinically isolated syndrome? (I guess I did...)
The medscape link now seems do deny access; here is another one
http://www.emaxhealth.com/1275/generic- ... -sclerosis

As a pharmacologist (who has used docycycline himself for almost 20 years by now, most of the time in short "pulses" once per month as a safeguard against relapses) I can assure you that doxy is the better alternative to minocycline. Doxycycline obviously is HIGHLY effective in MS:
http://archneur.jamanetwork.com/article ... eid=795219
http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/24250865/

As I told you the "Lyme" testing is not reliable (as far as exclusion of an infection is concerned). Here is one article mentioning that:
http://www.emaxhealth.com/1275/multiple ... me-disease

A doxycyline "test therapy" has practically no risk, but the chance to stop MS even before it is diagnosed; cost is almost negligible. (That's the way I did it early in 1996, and I sure am glad I did it because in the meantime evidence is accumulating that that was very reasonable.)
All the best to you,
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Re: New - undiagnosed - scared...

Postby chenman » Wed Dec 09, 2015 4:11 pm

Did we "talk" about iron metabolism?
I was moderately overweight (and hypertensive) before I found out that I had high stored iron (serum ferritin ca. 300 ng/ml = ug/l) in 1993. I got rid of some 2,5-3 g of stored iron by about a dozen phlebotomies, identical to blood donations - and lost almost 20 pounds in the following months, without having attempted to loose weight.
Later on I became a regular blood donor (75 donations in about 15 years), to keep my iron stores on the low level of healthy children (below ca. 25 ng/ml). In my case it is a familial disorder, with two older brothers affected too. Both were diagnosed following my hints and have been phlebotomized regularly by their respective GPs over all the years.

High iron stores increase cardiovascular risk, i.e.
http://www.ncbi.nlm.nih.gov/pubmed/12079862
There are many other benefits from low iron STORES (with normal Hb / Hct, that is without anemia). Therefore anybody should better know the own ferritin value. There is quite a genetic risk to store more iron than is healthy, and a relatively high ferritin value can tell if a person is affected. (Unfortunately routine screening is not done.)
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Re: New - undiagnosed - scared...

Postby kw202 » Tue Jan 05, 2016 7:19 am

Well I saw an MS specialist yesterday and I have my official diagnosis. My spinal tap results showed >5 bands and there were some other items that were abnormal in ways that support a MS diagnosis. I can't say I'm happy about it, but it's been trending this way since the start and at least now I can chart a course, so that's something.

She said, though, my MRIs show only old lesions - no active ones. (??) So apparently I've had this a while and it just never bothered me, I guess. I asked her how it is then that I'm clearly having an episode and she said it could be too small to detect, they just didn't see it, or that they didn't give me enough contrast.

She also said that the brain lesions I have are few, small and in areas that have a lot of resiliency so I could have them until I'm 100 and never know the difference, but that my spinal cord has "significant involvement" of lesions whatever that means. She said looking at my MRIs she'd never expect me to be doing as well as I am doing, that she's seen people with much less involvement in much worse shape than me, and that she's shocked that I never had any problems that manifested themselves before. (Looking back I have had a couple weird sensory things over my life, but nothing that impacted me enough to seem concerning enough to seek treatment). I asked her why that could be, and she sort of shrugged, called me a "weirdo miracle in a good way" and said it's probably some combination of general good health and a genetic predisposition to having more spinal neural resources/resiliency than most. I think that's comforting? :-D

So, pretty soon I'll be put on IV steroids to try to knock back the current issues I'm having. She was completely on board with ensuring high levels of vitamin D and B12 in my system and encouraged paying attention to diet, though she didn't have any specific recommendations except to say a good diet is always helpful.

She said she doesn't do injectables because they're no better than pills. And she gave me a choice basically of Gilenya, Tecfidera or Tysabri. The statistics she showed me about Tysabri's effectiveness are clearly superior to the others, but the risk of PML is pretty scary. She was very high on Tysabri and I think if my blood test for the JC virus comes back in a range that makes the risk acceptable I expect she'll recommend I choose that course, and her second choice seemed to be Gilenya because it doesn't upset the GI system and is just as effective as Tecfidera.

After poking around, Tysabri seems to be the drug people get put on after they stop responding to other drugs. I didn't think about it in the consult to ask, but isn't that a pretty high powered drug to recommend for my first time out, with my current symptoms? (Varying levels of numbness from torso to toes, mild balance issues, some heavy legs that make distance walking annoying). Most of the posts I see about people put on Tysabri seem to be in much worse shape than me. But, maybe she feels that my situation is aggressive enough or lesion load large enough to warrant somehow. I'll have to ask.

Thoughts appreciated!
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Re: New - undiagnosed - scared...

Postby jenlee » Tue Jan 05, 2016 4:59 pm

curious if you have an update? Sounds like you are being very thorough with a pretty good attitude. I
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Jan 06, 2016 7:25 am

jenlee wrote:curious if you have an update? Sounds like you are being very thorough with a pretty good attitude. I


Nothing more yet, just waiting on the home care people to arrange the IV steroids. (Getting frustrating, I am an impatient person.) I'm also still waiting on the results of my JC virus blood test to see whether Tysabri will be a realistic option for me or not at this time. That probably won't come back until next week - then I'll have another talk with my specialist about medicine options.

Thanks for the encouragement. I've always been the kind of person who assumes the best is going to happen to me and then works toward making it happen, but this did shake me for a while. It still does sometimes. I was talking to my mom the other day about how even dire diseases like cancer have thresholds you can pass where your risks decline enough that you can breathe easy; no such thing with MS, and what a grind that must be. When I told her about the different medicines I've been presented with, their risks etc., I had to underscore that whatever I choose, there is no cure. I'll be on this medicine forever, with the best outcome to simply not get any worse. The rest of my life. She got really quiet. Not what you want to hear your kid tell you.

But, I'm not one to just lay down and die, so the first thing I did was search for some measure of control and I found it in diet and supplements - and in the kind people here. It's a long road but I have to do what I've always done, which is assume I'll be just fine, and work toward making sure of it. What else can I do? I believe in the mind-body connection and it does no good to worry yourself to death, or go to bed and sleep all day.

I'm 43, and apparently my body has been just sort of handling the MS without any help from me for who knows how many years so far, so now that I'm consciously making positive steps I'm going to assume that it's going to be just fine, and that I'll keep living my life exactly the way I want to. That's the intention I set every day, and the energy I want to project and absorb.
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Re: New - undiagnosed - scared...

Postby kw202 » Tue Jan 12, 2016 11:11 am

Couple things to update. Today was my last day of IV solumedrol and I'm feeling so much better in terms of the numbness in my legs and balance issues. I haven't had much of a chance to try out any distance walking but I feel relatively little disturbance in terms of numbness or strangeness in my legs around the house so my guess is it will be close to normal. I've had moderate improvement in the numbness to my fingers, under side of my right arm, and somewhat to my torso, but my back still wants to clench when I'm active. But I can live with that if that's what's left, as most of that is an annoyance and doesn't actually impede my functioning (except it's a little annoying with touch typing).

Also I got some labs back today. I am JCV negative, which is a relief since I'm consideing Tysabri. I haven't seen the actual result to see where I am on the scale yet, but apparently it's below the marker.

My vitamin D, after two rounds of megadosing in different ways, is now up to 58 ng/ml, which is much closer to where I want to be - but still not quite there yet.

I will probably do another megadose after I let my body settle out from the steroids a bit. So my first method was to take a 400,000 IU dose followed by 10,000 IU daily supplementation, which raised me from 9.9 - 33.3 ng/ml. My next method was to take 50,000 IU daily for 10 days, followed by 10,000 IU daily supplementation, which raised me from 33.3 - 58 ng/ml. The second method seems to have been slightly more effective. When I get to the level I want to be (80-100) I'll have to start experimenting with what is an appropriate maintenance dose for me, more testing etc. But I'm getting there.

My B12 has also increased tremendously, from 192 (and declining - the prior test was 228) to 746. The upper range of normal is 1,000. What is the suggested therapeutic dose for MS or generally for those exhibiting neurological symptoms? My neurologist told me if you're exhibiting neurological symptoms the minimum level is 600. But I'm not interested in the minimum. I'm interested in the ideal protective level. This will determine how much I drop back on B12 and when.

I have been eating leafy greens daily like a rabbit and also aggressively supplementing B12 - checking my records, I've been taking 6,000 mcg daily since 12/12 - exactly a month. So I will probably drop back a bit and then see how I am at retest - though I'm not sure how much. Suggestions welcome.

At the time of that test that returned B12 of 192, I was also on the low side of normal for folate, so I've been supplementing methylfolate at 1000 mcg daily since that time as well to help with absorption. My multivitamin that I'm taking now has 200 mcg of folic acid (not as good, but) - so I may just drop the methylfolate and see how I do at retest.

I also had a new CBC and metabolic panel run but haven't seen those results yet.
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Re: New - undiagnosed - scared...

Postby lyndacarol » Wed Jan 13, 2016 8:29 am

kw202 wrote:My vitamin D, after two rounds of megadosing in different ways, is now up to 58 ng/ml, which is much closer to where I want to be - but still not quite there yet.

I will probably do another megadose after I let my body settle out from the steroids a bit. So my first method was to take a 400,000 IU dose followed by 10,000 IU daily supplementation, which raised me from 9.9 - 33.3 ng/ml. My next method was to take 50,000 IU daily for 10 days, followed by 10,000 IU daily supplementation, which raised me from 33.3 - 58 ng/ml. The second method seems to have been slightly more effective. When I get to the level I want to be (80-100) I'll have to start experimenting with what is an appropriate maintenance dose for me, more testing etc. But I'm getting there.
I am curious… How did you obtain your initial 400,000 IU dose of vitamin D3? I assume you are being monitored by your doctor. Where did you find a doctor in the US who would prescribe or administer 400,000 IU?

kw202 wrote:My B12 has also increased tremendously, from 192 (and declining - the prior test was 228) to 746. The upper range of normal is 1,000. What is the suggested therapeutic dose for MS or generally for those exhibiting neurological symptoms? My neurologist told me if you're exhibiting neurological symptoms the minimum level is 600. But I'm not interested in the minimum. I'm interested in the ideal protective level. This will determine how much I drop back on B12 and when.
As for your B12 question… In the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.) the authors write on page 11: “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.” http://b12awareness.org/could-it-be-b12 ... diagnoses/

The reason for the decline in B12 from the initial B12 test result of 228 pg/mL to 192 may be the IV Solu-Medrol, if this was taken between the two test occasions. Corticosteroids deplete B12 levels.
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Jan 13, 2016 8:44 am

lyndacarol wrote:I am curious… How did you obtain your initial 400,000 IU dose of vitamin D3? I assume you are being monitored by your doctor. Where did you find a doctor in the US who would prescribe or administer 400,000 IU?


I didn't, really. Part of it is my own orneriness, part is help from a doctor. It certainly wasn't done to his orders, though.

Early on when my ortho was testing for potential degenerative issues that could have caused a stress fracture in my hip with no trauma, before anybody ever even breathed the words MS at me, he tested my D levels and that's the first it came back low (9.9).

He wrote a scrip for me for 50,000 IU pills 1x/week for 8 weeks (it was D2 actually though), and days after that my MRIs came back showing lesions suspect for MS.

Then I started researching MS and low vitamin D and how it can protect against relapses and decided I was going to, on my own, dose myself to get as quickly to a therapeutic-protective level for MS as I could. After I found that large one-off doses of D3/D2 aren't toxic I decided, especially given my weight, that I wasn't going to dose it out that slowly. So I took it on myself to take them all at once (200K IU D2 -- that's half the Rx pills, because my insurance would only pay for a one-month supply at once), plus another 200K IU worth of D3 from a big bottle I purchased myself - so I choked down the additional pills of on my own volition. 8)

Of course that was not at all my doctor's recommendation, though my ortho did write me the scrip for higher dose pills, just not in the way I used them. I saw my GP pretty soon after that, actually mostly to see if she wanted to give me a B12 shot since that was low too, and her eyes got REALLY BIG when I told her how much I had dosed - but I didn't really care and she didn't say much other than to order me another D test, which showed that dose bumped me up about 20 points.

Now I have the other half of the Rx D2 pills so I'm considering just taking them all as a mega-dose to bump me up again. When I told my MS specialist last week about my D supplementation regime, she didn't seem to care how I got there (and she didn't seem flustered at all by the large doses I had taken either) - she was just happy that my levels are rising into the protective area. I told her I'd like to maintain around 90 ng/ml, expecting to have a fight, and she said "We love 90!" She did mention they'd probably want me to make adjustments for daily dosing though as we figure out an ideal maintenance dose, which seems reasonable to me.

lyndacarol wrote:
kw202 wrote:My B12 has also increased tremendously, from 192 (and declining - the prior test was 228) to 746. The upper range of normal is 1,000. What is the suggested therapeutic dose for MS or generally for those exhibiting neurological symptoms? My neurologist told me if you're exhibiting neurological symptoms the minimum level is 600. But I'm not interested in the minimum. I'm interested in the ideal protective level. This will determine how much I drop back on B12 and when.
As for your question… In the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.) the authors write on page 11: “For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/mL.” http://b12awareness.org/could-it-be-b12 ... diagnoses/


Thank you!
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Re: New - undiagnosed - scared...

Postby kw202 » Wed Jan 13, 2016 8:57 am

lyndacarol wrote:The reason for the decline in B12 from the initial B12 test result of 228 pg/mL to 192 may be the IV Solu-Medrol, if this was taken between the two test occasions. Corticosteroids deplete B12 levels.


Ah, that's a good point. At that time actually I had not been put on the solumedrol, but rather a round of oral methylprednisolone, a smaller dosepak. I believe I was indeed on them at that point for that test, so that could well explain it. I just finished the 1250mg solumedrol yesterday, subsequent to this last B12 test, so I'll probably have an even bigger drop. At this point I'm not expecting to have my levels retested until March though, so I'll have to wing it a bit.
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