New almost-diagnosed progressive MS

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suchicken
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New almost-diagnosed progressive MS

Post by suchicken » Sat Oct 31, 2015 9:10 pm

Hi folks -

I've been lurking for a while and rummaging through all this great info. What an amazing resource.

So I'm 57, female, and have more than 30 brain lesions. (I'm tempted to throw in my astrological sign and list of pet peeves here.) Two years ago I suddenly had trouble with balance, walking and continence. My GP and I assumed it was that bad lumbar disc, and tried McKenzie exercises, physical therapy and finally MRIs and consults with a spine surgeon. Then the brain MRI, lots of blood tests and three neurologists. The last guy wanted to send me right in for IV steroids and then maybe one of the MS drugs even though I haven't been officially diagnosed. He said that if he put "progressive" in my file, my insurance wouldn't cover anything since there are no approved treatments for PPMS, but one of the RRMS drug treatments "might" help me. So I turned him down and am now waiting to see a naturopath to give me some guidance on supplements, and get lab tests on any underlying infections/deficiencies. I also have a referral to the local MS clinic if I want to go that route later.

So I think I'm on the right path for me, and I owe it to the info you all have posted on this forum.

Appreciate it.

Su

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sat Oct 31, 2015 10:33 pm

It's all pretty damn scary. I live in the country, have animals depending on me, a big garden and a full-time job in town. My partner's older than me and not in the best of health. I've always been tough enough to get the job done. (Eventually. You should see some of my slow-motion carpentry. Not pretty.) I mourn my lost health.

So, anyway, my early blood tests showed vit. D deficiency. B-12 was normal, but it was just a serum test. I hope the new guy will be willing to test more thoroughly. After researching, this is the regimen I'm taking. Any red flags?

D3 4,000-5,000 IU

B-100

B-12 5,000mcg

C 5,000 mg

E 1.7 IU
plus tocos 50 mg

CoQ10 100 mg
plus black pepper

A 5,000 IU
D 400 IU
Calcium 1,000 mg
Magnesium 400 mg
Zinc 15 mg

NAC 600 mg
Selenium 50 mg
Molybdenum 50 mg

Serrapeptase 40,000 SPU
Calcium 24.5 mg

GABA 250 mg

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NHE
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Re: New almost-diagnosed progressive MS

Post by NHE » Sun Nov 01, 2015 2:00 am

Welcome to ThisIsMS Suchicken,
Do you have a copy of your blood test results? I'm particularly interested in your B12 level. In addition, do you know if your doctors tested homocysteine, folate and methylmalonic acid (MMA)?

Regarding your supplements, is the CoQ10 with black pepper using piperine? I'm not much of a fan of piperine since it inhibits the cytochrome P (CYP) family of enzymes which are needed for detox, drug metabolism and vitamin D3 processing. See http://www.thisisms.com/forum/natural-a ... ml#p181912 and http://www.thisisms.com/forum/natural-a ... ml#p217052 You may do better with a ubiquinol supplement instead. Costco periodically has sales on the Qunol brand of ubiquinol. If you can get it at their sale price, then it's about the best deal I've seen for $/mg. I'm also wondering what kind of B12 you're using. Is it methylcobalamin or cyanocobalamin? The methyl form would be preferable though some people like to take a mix of methylcobalamin and adenosylcobalamin (the latter of which is found in the mitochondria).

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Re: New almost-diagnosed progressive MS

Post by ElliotB » Sun Nov 01, 2015 3:59 am

Sorry to hear you are not feeling well. What type of diet are you following and do you exercise regularly?

Are you familiar with Biotin and other supplement and may help you feel better? Do you take any?

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lyndacarol
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Re: New almost-diagnosed progressive MS

Post by lyndacarol » Sun Nov 01, 2015 9:14 am

Welcome to ThisIsMS, suchicken.

The actual number results for your blood tests are more useful than "normal" or "fine." If your new doctor will be ordering additional tests, it is a good idea to request your own copy of the test results.

You listed "B-12 5,000mcg" – If you were taking vitamin B supplements before the serum B12 test was done, the results were very probably skewed and even the vague assessment of "normal" cannot be trusted.

The 3 tests (homocysteine test, folate test, and methylmalonic acid test) suggested by NHE should also be part of the initial evaluation of your B-12 status; they are relatively inexpensive and offer useful information. I assume your naturopath will want to be certain of your levels before prescribing supplements.

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 9:50 am

Hi Lyndacarol -

I held off taking the B supplements for ages, waiting for somebody to take the three tests, but GP and neuros refused. Just recently started taking them. I see the naturopath in a month. Should I stop the Bs in the meantime? And Biotin throws the tests off, too, no?

Thanks,

Su

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 10:13 am

I do have the numbers.
CBC w/plt + diff

WBC - 7.0 K/uL
RBC - 5.94 M/uL (High)
Hemoglobin - 15.4 g/dL
Hemocrit - 46.5% (High)
MCV - 78.3 fL (Low)
MCH - 26.0 pg (Low)
MCHC - 33.2 g/dL
RDW - 15.4%
Platelet count - 245 K/uL
Differential - automated
Polys - 56.9%
Lymphocytes - 28.7%
Monocytes - 7.9%
Eosinophils - 5.3%
Basophils - 1.2%
Neutrophils, absolute - 4.00 K/uL
Lymphocytes, absolutes - 2.00 K/uL
Monocytes, absolute - .60 K/uL
Eosinophils - .40 K/uL
Basophils, absolute - .10 K/uL

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 10:22 am

More numbers.

ANA - neg (no specifics)
Cholinesterase, plasma - 5.1 U/mL
Cholinesterase, RBC - 12.3 U/mL
Cholinesterase, RBC/HGB ratio - 38 U/gHgb
Cholinesterase, Plasma ellman - 1.7 U/mL
RBC Ellman std - 5.7 U/mLWB
Vitamin D, 25-hydroxy - 14 ng/mL
Folate - 8.6 ng/mL
Magnesium - 2.3 mg/dL
Cyclic Citrullinated Peptide AB, IgG - <16
Sed rate - 7 mm/h
TSH - 14.92 uIU/mL (high - taking levothroid 75 mg)

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 10:29 am

Protein electrophoesis

Total protein - 7.9 g/dL
Albumin SPE - 4.6
Alpha I SPE - .2
Alpha II SpE - .5
% Beta 1 SPE - .7
Beta 2 - .5
Gamma SPE - 1.4
% Albumin SPE - 58
% Alpha I SPE - 2.5
% Alpha II SPE - 6.9
% Beta SPE - 9.1
% Beta 2 SPE - 5.7
% Gamma SPE - 17.7

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 10:35 am

CMP

Sodium - 139 mmol/L
Potassium - 4.1
Chloride - 105
Carbon dioxide - 28
Glucose - 93 mg/dL
BUN - 10
Creatinine IDMS traceable - .59
Calcium - 9.6
Total protein - 7.9 g/dL
Albumin, serum - 4.2
Bilirubin, total - .5 mg/dL
Alk phos - 82 U/L
AST - 21
ALT - 14
Anion gap - 6 mmol/L
BUN/Creat ratio (calc) - 16.9

That's it for numbers!

Best,

Su

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lyndacarol
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Re: New almost-diagnosed progressive MS

Post by lyndacarol » Sun Nov 01, 2015 12:57 pm

suchicken wrote:Hi Lyndacarol -

I held off taking the B supplements for ages, waiting for somebody to take the three tests, but GP and neuros refused. Just recently started taking them. I see the naturopath in a month. Should I stop the Bs in the meantime? And Biotin throws the tests off, too, no?

Thanks,

Su
You were wise to hold off taking the B supplements, in the event that one of your doctors would test. Given that situation, a "serum B12" test should be a reliable measure of the total B12 in the bloodstream; but, at most, only 20% of this amount is carried on the transporter molecule that can deliver the B12 to the cells – the HoloTc test (which is not yet available everywhere) measures this active B-12.

(By the way, I did not find an entry for B12 in your list of numbers. Is it possible that a "serum folate" test was done – and a "serum B12" test was not done? I have only seen B-12 levels with units of pg/mL or pmol/L. I have no medical background; it is entirely possible that I am misreading your results.) Other members here will have more experience with your other tests/results.

I am constantly amazed that doctors will not honor our wishes for inexpensive blood tests (each of the three mentioned above costs less than $150) when investigating neurologic symptoms. In my opinion, they are all too willing to order testing and imaging that costs many hundreds of dollars more!

It is my understanding that it is recommended to discontinue supplements at least 2 weeks before testing. So just in case your naturopath would be willing to order testing, it would be a good idea to observe a washout period. And I believe you are correct: Biotin would also skew test results.

Good for you, Su!!! I'm glad to see you have the numbers. Please let us know how things go.

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 2:05 pm

OK, I'll stop the Bs, and delay the Biotin in the hopes that the naturopath will be *compliant* on the testing. And I found a list of your recommended blood tests here: http://www.thisisms.com/forum/undiagnos ... 22892.html. So I'll shoot for those as well.

My B-12 was 584 pg/mL.

How long have you had MS? And how are you doing? I read that you tried three of the mainstream drugs and now just use diet. Gluten-free? Dairy free?

Best,

Su

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lyndacarol
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Re: New almost-diagnosed progressive MS

Post by lyndacarol » Sun Nov 01, 2015 3:13 pm

suchicken wrote:My B-12 was 584 pg/mL.
Blood tests recommendations came from the University of Chicago (and I think it's a good place to start an investigation of symptoms):
http://peripheralneuropathycenter.uchic ... #bloodtest\

I urge you to read 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.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury.
Also on page 11, these authors state: "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."

Although your level at 584 pg/mL appears to be good, be aware that the "serum B12" test measures total B12 in the bloodstream. Not all of this amount is carried on the transporter molecule that can reach the cells and be used. Only 4-20% is "active" and able to reach the cells. It is possible to have a functional deficiency in the cells even when there appears to be an adequate amount in the blood.

I began with a low/no-carb diet, then a gluten-free diet, but in the last few months I have begun to follow an organic diet. I do not follow a dairy-free diet per se – I have never been a milk-drinker; I consume very few dairy products – a little butter and cheese only.

suchicken
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Re: New almost-diagnosed progressive MS

Post by suchicken » Sun Nov 01, 2015 5:00 pm

Hi NHE and ElliotB-

I managed to lose my reply to you, which is a pity because it was both touching and hilarious. :) I'll replace my CoQ10. No use wasting all this D3 I'm taking. I'll track down Ubiquinol. Thanks for the info! The B-12 is methyl, but I think I'll add some adenosylcobalamin when I go back to taking Bs (I'm stopping now in prep for some more blood testing).

Elliot, I'm on the old hippie diet of mostly homegrown veggies, organic brown rice, and no junk except for chocolate. No smoking, alcohol only when I begin to worry about all this. Yes to dairy and eggs (from local farmers) and gluten (homemade bread with organic ww flour). I'm reluctant to give all that up, but I will if it means I can walk and hike again. Exercise consists of a short daily walk (usually with a cane), farm chores, wobbling around the garden (on a hillside), and wrestling with goats.

I'm going to order some Biotin to take as soon as blood tests are done.

thanks for the help!

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NHE
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Re: New almost-diagnosed progressive MS

Post by NHE » Mon Nov 02, 2015 12:21 am

suchicken wrote:I managed to lose my reply to you, which is a pity because it was both touching and hilarious. :) I'll replace my CoQ10. No use wasting all this D3 I'm taking. I'll track down Ubiquinol. Thanks for the info! The B-12 is methyl, but I think I'll add some adenosylcobalamin when I go back to taking Bs (I'm stopping now in prep for some more blood testing).
Sally Pacholok, coauthor of the book "Could It Be B12?," recommends Superior Source Advanced B12 sublingual tablets. They have 1000 µg methylcobalamin and 1000 µg adenosylcobalamin.


Here's a link to the full interview from the beginning.


Also note that methylcobalamin works hand in hand with folate. They are like two wheels of a bicycle in that you're not going to get very far with only one or the other (methylcobalamin transfers a methyl group to homocysteine making methionine and methylfolate regenerates methylcobalamin back to its active state). So, either regularly eat lots of uncooked dark leafy greens or take methylfolate. Folic acid is a poor substitute and is not processed well by the body leaving much of what is taken as unmetabolized folic acid which can cause problems including inhibiting the uptake of real folate from dietary sources.

Lastly, I don't want it to seem like I think everybody has a B12 deficiency. I only stress it because B12 deficiency can cause many of the same symptoms as MS, including spinal cord and periventricular lesions seen on MRI, and can only be distinguished from MS by thorough testing. In addition, if one has B12 deficiency, whether you have an MS diagnosis or not, taking MS drugs will be of no value and your disability will continue to progress to the point of being irreversible or lethal.

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