well, here I go...

[specialk1180]

hi everyone. first off, thanks tons for having this site. i've found it incredibly useful and even inspiring in the last month or so, since i picked up my ms dx 8/18. i do still have a few questions though i'm hoping someone can weigh in on...

backstory: i suspect this 'relapse' of mine has been going on for 1-2 years now, but it was only noticeable to me as something different starting in the last 6 months or so, with what i now know to be lhermittes sign. i already have chronic depression and stress (unmedicated), so i just related the fatigue to that. other ms symptoms i just attributed to other issues i already had (nothing major).
anyway, after a few visits to the chiro didn't fix my feet tingling, they referred me to a neuro clinic (which my pcp says is a really good one). neuro did a few mris, and found 2 active lesions (brain) and 1 inactive (cervical spine). had them check my vitamins d and b12 (d=25, b12=285) so i know that's low, but i don't think dangerously so?? well, at the end of the day, they say i have ms... so, 4 weeks ago, i completed 5day iv round of 1g solumedrol, followed by the oral pred taper.

fast forward to today, i still feel like crud, tired as hell, still buzzing along. further, it even seems some of my symptoms are getting worse (new facial tics and buzzing in different parts, especially if i'm stressed or tired, which is about all the time these days). based on a quick call with a neuro clinic assistant, sounds like i might be in for round 2 of the steroids. oh joy.
i also finally just got the insurance ok for copaxone 20mg/daily... i'm not really looking forward to starting this. 1) potential of isr scare me 2)the drug itself scares me, as it is a mystery... i'm *considering* not starting it at all. but, don't want to regret it and have irreversible effects.

so, is there anyone else out there who:
- got a dx so fast? thinks my d/b12 levels are to blame?
- had zero change in symptoms after steroids? and has gone in for a pretty immediate 2nd round?
- decided to not take dmd because early symptoms are minor (ie not worth the risk)? how/did this impact you?

thanks for your input ~ hope you all are well today.

[NHE]

Hi specialk1180,
Welcome to ThisIsMS. Your levels of both vitamin D3 and B12 are on the low side. In regards to your question about B12, a level of 285 pg/mL may still be within the range that most US labs use, but it's low enough that it could cause problems. It's best to shoot for a level between 500 and 900 pg/mL. A sublingual methylcobalamin supplement is an inexpensive way to bring your B12 back up. By the way, did you also get your serum levels of homocysteine tested? Having high homocysteine, a toxic amino acid, as a result of low B12 can cause a wide range of problems.

[specialk1180]

hello there, thanks for the quick reply!
no, i have not had homocysteine level tested (hadn't heard of it before), but will look to do so. i see on another thread here that "Standard Range 5 - 15 uMol/L"; would you say that is accurate? what can a person do to lower the level if it's found to be too high?
i'm now on b-12 1000mcg tab/daily. would you say this is as efficient as the sublingual?
i'm also on a d-3 50000unit tab/weekly. plan to have levels re-tested for both in about 8 weeks.
given the existing vitamin levels and what i'm now doing to increase those, do you think it's worth it to hold off on completing round 2 ivsm and/or starting copaxone until these vitamin levels come up some?

[lyndacarol]

Welcome to ThisIsMS, specialk1180.

According to page 72 in the book, Could It Be B12?,:

Note: your doctor should order these tests [1. Serum B12, 2. Urine methylmalonic acid (MMA), 3. Plasma homocysteine (Hcy), and 4. HoloTc] before beginning any treatment with steroids, Copaxone, Betaseron, or Avonex (Rebif). It is unknown if treatment with these drugs alters the results of MMA, Hcy, or HoloTc test. Also, testing should be done before you try any over-the-counter or prescription B12, which will skew B12 test results.

You do not want the homocysteine level higher than 15. The homocysteine level can be lowered by taking balanced B12 and folic acid (B9) supplements. (I have read that a medication called betaine can also lower very high levels of homocysteine. I do not know anything about this medication – mechanism of operation, side effects, etc.)

Any B12 supplements should be methyl B12 (a.k.a. methylcobalamin), as this is readily used by the body. The cheaper, less bioavailable form of cyanocobalamin is widely available, but not preferred. The sublingual or lozenge form is preferred over the tablet form, since sublingually it can be absorbed directly into the bloodstream (rather than going through the digestive tract). However, injections (of methyl B12) are even faster acting than sublingual B12 as it can go immediately into the cells.

Since B12 and D3 are both low and both are absorbed in the same section of the intestines, it seems to me there could be a problem with the villi in the small intestines. You might discuss with your doctor testing for gluten sensitivity, or even celiac disease, since gluten can damage the villi in some people (without any expected gastrointestinal symptoms).

[lyndacarol]

hi everyone. first off, thanks tons for having this site. i've found it incredibly useful and even inspiring in the last month or so, since i picked up my ms dx 8/18. i do still have a few questions though i'm hoping someone can weigh in on...

backstory: i suspect this 'relapse' of mine has been going on for 1-2 years now, but it was only noticeable to me as something different starting in the last 6 months or so, with what i now know to be lhermittes sign. i already have chronic depression and stress (unmedicated), so i just related the fatigue to that. other ms symptoms i just attributed to other issues i already had (nothing major).
anyway, after a few visits to the chiro didn't fix my feet tingling, they referred me to a neuro clinic (which my pcp says is a really good one). neuro did a few mris, and found 2 active lesions (brain) and 1 inactive (cervical spine). had them check my vitamins d and b12 (d=25, b12=285) so i know that's low, but i don't think dangerously so?? well, at the end of the day, they say i have ms... so, 4 weeks ago, i completed 5day iv round of 1g solumedrol, followed by the oral pred taper.

fast forward to today, i still feel like crud, tired as hell, still buzzing along. further, it even seems some of my symptoms are getting worse (new facial tics and buzzing in different parts, especially if i'm stressed or tired, which is about all the time these days). based on a quick call with a neuro clinic assistant, sounds like i might be in for round 2 of the steroids. oh joy.
i also finally just got the insurance ok for copaxone 20mg/daily... i'm not really looking forward to starting this. 1) potential of isr scare me 2)the drug itself scares me, as it is a mystery... i'm *considering* not starting it at all. but, don't want to regret it and have irreversible effects.

so, is there anyone else out there who:
- got a dx so fast? thinks my d/b12 levels are to blame?
- had zero change in symptoms after steroids? and has gone in for a pretty immediate 2nd round?
- decided to not take dmd because early symptoms are minor (ie not worth the risk)? how/did this impact you?

thanks for your input ~ hope you all are well today.

To answer your questions in your initial post:

I think your B12 levels could be to blame and here is my reasoning: #1 a B12 level of 285 pg/mL is low; #2 your symptoms are consistent with a B12 deficiency.

I "had zero change in symptoms after steroids" on two different occasions. Steroids are powerful drugs, which have lots of unintended consequences; for instance, high dose/long-term usage has an established connection to developing diabetes.

On the advice of my neuro I took Betaseron, then Avonex, then Copaxone, but I don't believe they changed the course of my disease one bit. The cause of MS is unknown; until the cause is known, I don't believe there is any effective treatment. I stopped all "approved medication for MS" about 14 years ago.

[vesta]

Greetings.

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

See as well - Five CCSVI MS Types (Congenital, Developmental, Aging, Skeletal, or Toxic M.S.)

MS Cure Enigmas.net

[specialk1180]

thank you all for your input. luckily i'm already set to be meeting with a dietitian (at a medical clinic) next week, and so will ask if she can order any add'l testing as you've recommended (as i'm not set to see my neuro again for a couple of months).

lyndacarol, i may have misled you in one area... to clarify: so far, i've only completed 1 round of steroids. i am just considering doing a 2nd round, since i have not felt relief after round 1 which finished about a month ago.

i will also be changing my b-12 from the rx cyanocobalamin, that i now realize i've been on, to the more useful methylcobalamin.
i'm a bit overwhelmed at what's on the market, though; any suggestions on brand or dosage?

[Youarethecure]

Just because you don't feel better doesn't mean the steroids did not work. Some symptoms take a long time to clear up even when the disease is not active. They should do another mri to check if anything is active before going through another steroid treatment.

Why 20 mg daily and not the three times a week 40mg? Copaxone is nothing to fear. It is the most simple medication out there. It is very simply a synthetic strain of amino acids... (protein).

I take it 3 times a week and today was my 87th time of doing it. It only gets easier as time passes.

Best wishes,

Chris

Steroids also have MANY MANY MANY MANY side effects that suck.

[Youarethecure]

Greetings.

MY FIVE STEPS TO MULTIPLE SCLEROSIS HEALTH

1. DETOXIFY
“Dr. Hyman explains his 10 day detox diet.
want2bike (From Thisisms.com)
I had the advice/assistance of a kinesiologist/nutritionist and won’t myself suggest a detox protocol. Dr. Hyman maintains that a simple diet change over 10 days will do the trick (or at least be a beginning) which is something anyone can try. So why not?
See also Detoxification and Supplements

2. OPTIMAL NUTRITION AND SUPPLEMENTS - Paleo-Macrobiotic Diet

3. ENHANCE BLOOD/CEREBROSPINAL FLUID CIRCULATION - CCSVI - See Acupuncture (which includes Tens Self Acupressure)
Simple blood/cerebrospinal fluid circulation thérapies such massage, acupuncture, neuro-muscular electrical stimulation, osteopathy, or swimming may suffice. I do daily Tens self acupressure treatments to stay afloat and try to get an acupuncture or osteopathic treatment once a month. A serious venous blockage may require ANGIOPLASTY. Prior to taking that decision, one might consult a specialist in skeletal disorders (e.g. Chiropractors or Osteopaths) to be certain a bone, muscle, tendon etc is not obstructing the vein.

4. SUNLIGHT OR UV RAYS on the skin at least 15 minutes daily to release Nitric Oxide essential to vascular health and blood circulation.

5. EXERCISE BUILD UP PROGRESSIVELY (Consulting a Physical Therapist can help)

See as well - Five CCSVI MS Types (Congenital, Developmental, Aging, Skeletal, or Toxic M.S.)

MS Cure Enigmas.net

I REALLY like what your selling here vesta.

[ElliotB]

DMDs basically help reduce the frequency of relapses over the long term. If you are ever going to start taking one, sooner is better than later - later may be too late.

Vesta's post says it all!

With regard to Copaxone, how it works is a mystery, but the bottom line is that it does appear to work, especially for those who take it over the long term (10+ years)

[lyndacarol]

thank you all for your input. luckily i'm already set to be meeting with a dietitian (at a medical clinic) next week, and so will ask if she can order any add'l testing as you've recommended (as i'm not set to see my neuro again for a couple of months).

lyndacarol, i may have misled you in one area... to clarify: so far, i've only completed 1 round of steroids. i am just considering doing a 2nd round, since i have not felt relief after round 1 which finished about a month ago.

i will also be changing my b-12 from the rx cyanocobalamin, that i now realize i've been on, to the more useful methylcobalamin.
i'm a bit overwhelmed at what's on the market, though; any suggestions on brand or dosage?

Since you have been on a vitamin B12 supplement (cyanocobalamin), it is my understanding that a serum B12 test now would NOT give reliable results. I do not know about the other tests; run them by the dietitian next week – maybe she will know.

It is a very good idea to change from cyanocobalamin to methylcobalamin. I have no particular brand recommendation. I can only say that I have used Jarrow Formulas Methyl B-12 5000 µg sublingual lozenges (cherry flavor). I am currently self-injecting 1000 µg of methylcobalamin, intramuscularly (these can also be done subcutaneously as a diabetic does with insulin), – ordered by my doctor from a compounding pharmacy. (In the US B12 shots offered at doctors' offices are cyanocobalamin.)

[specialk1180]

i was much more comfortable with the idea of copaxone 40mg/3x/wk, but unfortunately, my insurance denied it. so, now that i'm resigned to a daily dose, i'm more inclined to go the path that vesta suggests (which doesn't seem to suggest any medications)... though on the other hand, i still completely get what elliotb said about the possibility of a later start of dmd being too late. i know that i'm still early on in terms of damage done, so would like to keep it to a minimum if i can.

gaah! i feel so torn! it's not helping that the timing on this is so tricky. i feel like it's hurry up and wait; act now, but not too fast! my copaxone is set to deliver next week. i think i will wait to start it, though, until i can get results on the tests mentioned earlier by nhe and lyndacarol (knowing it might be skewed some by my recent uptake of the cyan- b-12). lyndacarol, thanks for the note on the cyan- version being what's provided for injection at US dr office!!! i also appreciate youare's suggestion of having another mri before another steroid treatment. neuro said i won't get another mri for a year, unless something/symptoms really change.
so maybe after this series of testing/results, then boost on b-12 (how long?), then i can see if symptoms improve, and if not, if i feel another mri or steroid round is needed. does this path sound logical to you knowledgeable folks?

aaagghh, were you guys like this in the beginning too?? look left! look right! stop! go! don't do this! do that! i promise, i'm not normally an indecisive person, but with this ms stuff, i feel like as soon as i think i find the right answer to something, i find another that contradicts it and makes me doubt my path. i'm so new to it, that i don't yet know what feels right, to my mind or my body.

ps, i've also ordered the "Could It Be B12?" book that i've seen quoted here and on other sites so many times now. must be something to it, eh? i feel like i classically fit an ms dx, but maybe i'd like to prove myself wrong.

[NHE]

hello there, thanks for the quick reply!
no, i have not had homocysteine level tested (hadn't heard of it before), but will look to do so. i see on another thread here that "Standard Range 5 - 15 uMol/L"; would you say that is accurate?

4-12 µmol/L is the range I'm familiar with. Moreover, one healthcare group in my area uses a range that tops out at 9 µmol/L.

what can a person do to lower the level if it's found to be too high?

Take B12, folate and B6. Trimethyl glycine also helps lower homocysteine, but I would look for a combination of B12 and folate (not folic acid).

i'm now on b-12 1000mcg tab/daily. would you say this is as efficient as the sublingual?

Yes, though see above re: folate.

i'm also on a d-3 50000unit tab/weekly.

With taking that much you should also take some magnesium such as magnesium glycinate which is a readily absorbable form. Some people have experienced increased muscle spasticity with high D3 dosages. Magnesium helps to prevent this problem, but may not eliminate it.

given the existing vitamin levels and what i'm now doing to increase those, do you think it's worth it to hold off on completing round 2 ivsm and/or starting copaxone until these vitamin levels come up some?

B12 deficiency is a differential for MS. In effect, MS is a diagnosis of exclusion and B12 deficiency needs to be eliminated as a possibility before an MS diagnosis can be made.

[lyndacarol]

i was much more comfortable with the idea of copaxone 40mg/3x/wk, but unfortunately, my insurance denied it. so, now that i'm resigned to a daily dose, i'm more inclined to go the path that vesta suggests (which doesn't seem to suggest any medications)... though on the other hand, i still completely get what elliotb said about the possibility of a later start of dmd being too late. i know that i'm still early on in terms of damage done, so would like to keep it to a minimum if i can.

gaah! i feel so torn! it's not helping that the timing on this is so tricky. i feel like it's hurry up and wait; act now, but not too fast! my copaxone is set to deliver next week. i think i will wait to start it, though, until i can get results on the tests mentioned earlier by nhe and lyndacarol (knowing it might be skewed some by my recent uptake of the cyan- b-12). lyndacarol, thanks for the note on the cyan- version being what's provided for injection at US dr office!!! i also appreciate youare's suggestion of having another mri before another steroid treatment. neuro said i won't get another mri for a year, unless something/symptoms really change.
so maybe after this series of testing/results, then boost on b-12 (how long?), then i can see if symptoms improve, and if not, if i feel another mri or steroid round is needed. does this path sound logical to you knowledgeable folks?

aaagghh, were you guys like this in the beginning too?? look left! look right! stop! go! don't do this! do that! i promise, i'm not normally an indecisive person, but with this ms stuff, i feel like as soon as i think i find the right answer to something, i find another that contradicts it and makes me doubt my path. i'm so new to it, that i don't yet know what feels right, to my mind or my body.

ps, i've also ordered the "Could It Be B12?" book that i've seen quoted here and on other sites so many times now. must be something to it, eh? i feel like i classically fit an ms dx, but maybe i'd like to prove myself wrong.

Take a deep breath, specialk1180. Your reaction to such a recent diagnosis of MS (August!) is normal, completely understandable (when faced with all the information and opinions), and probably shared by most of us here (I know that I completely melted down when I got the diagnosis from my neuro's office… over the phone, no less!)

There are lots of opinions on MS (we have LOTS of them here) – possible causes, treatments, expectations; read, read, read and ask lots of questions, and you will develop your own opinions, too. Bottom line: we make the best choices for ourselves that we can; there is no one, right answer to the question of MS – there is no consensus of opinion even among the "experts."

[vesta]

Greetings again:

(And thanks for the postive comments.)

Even though Joan Beal's husband's angioplasty with stent (Stanford 2009) continues to be a success, he also uses Copaxone. (see quote below). Dr Ebers is definitely against being rushed into DMDs and he should know having followed MS patients since the 1970's.

QUOTE/
On March 21, 2013 it was announced that Professor George C. Ebers, MD, of University of Oxford in London, had been chosen to receive the National MS Society/American Academy of Neurology’s 2013 John Dystel Prize for Multiple Sclerosis. The following quotes come from http://www.nationalmssociety.org site.

"His studies of twins have shown that susceptibility is partly genetic and partly environmental, indicating that MS is a complex genetic disease. These findings contribute to efforts to end MS through prevention. (Proceedings of the National Academy of Sciences U S A 2003;100:12877) This showed linkage to the Human leukocyte antigen (HLA) complex (genes related to the immune system) on chromosome 6. (Lancet 1982;2:88)…
Research is increasingly pointing to reduced levels of vitamin D in the blood as one factor that can increase the risk of developing MS. (Annals of Neurology 2011;70:881)
Delineating the natural history of MS: Dr. Ebers has performed detailed studies tracking over time the “natural history” of MS in London, Ontario, Canada, following more than 1,000 individuals since 1972. Natural history studies provide important knowledge, such as the average number of MS relapses a person may be expected to experience. This helps to appropriately design clinical trials and interpret their results. These studies have been published in a series of important papers on topics such as the predictive value of the early course of MS (Brain 1989;112:1419), and the features of primary progressive MS. (Brain 1999;122:625)…

Epidemiology of MS: Dr. Ebers’ studies have forged new paths our understanding of who gets MS, which is the goal of epidemiology. In a study of over 40,000 people from Canada, Sweden, Norway and the United Kingdom, Dr. Ebers showed that the relative risk of developing MS is higher if you are born in May (like me) and lower if you are born in November. The finding of a birth pattern suggests the possibility that the origins of the disease date to very early in life. (British Medical Journal 2005;330:120)" (My comment. The Sun related Vitamin D deficiency persists throughout growth. For example, people who moved to Sweden from Iran at an average age of 17 developed MS at the higher Scandinavian rate. (Ahlgren et al., 2010).

Dr. Ebers also has contributed to the study of gender differences in MS. Among other contributions, he documented in 2006 a significant increase in the number of women diagnosed with MS more than men, noting that the female to male ratio in the incidence of MS had increased progressively over the previous 50 years. (Lancet Neurology 2006;5:932) (My comment.. The FDA approved Birth Control Pills in 1960. I suspect use of hormonal therapy has triggered the striking increase in female susceptibility to MS, the original male/female ratio being 1:1.)

A series of studies on the relatives of people with MS including spouses, half-siblings, adoptees, and step-siblings suggested the idea that increases in the risk for developing MS come less from the familial environment than from factors operating at a general population level, such as climate and/or diet. These studies led to examination of role of Vitamin D in MS risk and the potential of vitamin D supplementation for MS patients and their families. (Lancet Neurology 2008;7:268)"

The Neurology Community was less pleased with Dr. Ebers when on 17 October 2013 he gave a lecture titled “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency. (Thus far there have been only 803 views.)

Dr. Ebers basically said that current MS medications do NOT prevent descent into Progressive MS disability. See my blog (MS Drug/MRI Fallacy January 5, 2014) DMD’s treat the inflammation of the early RRMS. Once the Progressive stage sets in, they don’t work and decline sets in. Apparently the brain atrophies as do the veins draining the brain. It has been demonstrated that blood transit time in MS patients is one half that of normals. The question is one of perfusion i.e. blood flow, volume and mean transit time. ALL brain fluids contribute to adequate blood flow.

Dr. Ebers has engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors. If one obediently follows standard therapy only to finish in a wheelchair, by which time the CCSVI option and/or the “nourish the grey matter” option are less viable, one will have made a mistake. I believe current research delays owing to ideology and vested interests border on criminal.


Joan Beal (cheerleader on Thisisms.com), who oversees treatment for her husband Jeff, has combined the various options by 1) arranging the first Stanford CCSVI MS angioplasty (in his case the Jugulars were opened with stents) 2) using the MS drug Copaxone to prevent relapses and 3) "prescribing" optimal nutrition to nourish the brain's grey matter as well as the veins' epithelium.The Neurology community is still busy denying the viability of the CCSVI option, clinging to the observation that the benefits of Venoplasty disappear over time. So why not find out why and how to fix it? "

END QUOTE

from MS Cure Enigmas.net