reengaging w/ ms stuff

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reengaging w/ ms stuff

Postby SleepingMonkey » Thu Apr 17, 2014 5:41 am

this is mostly copy/pasted from a reintroduction I posted on a far less active board yesterday

My account has been dormant so long that I think I registered with an email attached to an ISP that I abandoned years ago. I was psyched when this forum started and it seemed to be attracting good people, but I started to feel like I was dedicating too much time to my identity as a patient and stopped checking in.
I'm still not sure who takes the time to read these things, but hello.

I was diagnosed with multiple sclerosis back in December of 2002. It was terrifying. I spent a lot of time online trying to jam as much information into my head as I could handle. Lucky for me, I was only marginally employed 3-4 days a week as a relief worker for a human service agency right outside Boston. Some doctor at Salem Hospital's ER (lived in Salem then) was too blinded by his politics to really listen to the symptoms I was presenting, so it wasn't until I was at work in Chelsea one day & decided to stop by MGH's walk-in clinic that I got on the road to a diagnosis. They didn't care that I was uninsured.

A year later, I was married. And insured. And had a "real" job with the same company I had been at.

I fell into working in residential programs for people with MH issues after college and never really found a way out. I loved my lousy-paying job in Chelsea, but felt that I had to accept one with a better title at another place when it was offered. The pay was still crap and I spent days on end more isolated than I'd ever been, but at least I could put "manager" on my résumé. Stupid

Towards the end of my sentence there, my wife gave birth to two perfect twins. Boy and girl.
I've been home with them since they were about 8 months old and days are fulfilling once again. But MS is starting to get in the way. That's why I'm back here again rather than digging through the web for free music and trouble.

So, again, hello. This forum was still fairly new when I unplugged from the online MS community but looks pretty strong. I'm grateful there's a still place for patients that not beholden to drug companies' backing for it's existence
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Re: reengaging w/ ms stuff

Postby jimmylegs » Thu Apr 17, 2014 6:04 am

hello, and welcome back! :)

what kind of symptoms are you dealing with, that are getting in the way of life with the fam?
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Re: reengaging w/ ms stuff

Postby SleepingMonkey » Thu Apr 17, 2014 8:36 am

Hi, there! and thanks

I've got some new loss of coordination in my hands and legs that's making it tougher to keep up with two very active two year olds. Double vision isn't a new problem, but it seems tougher to shift focus to deal with sunlight and crowds recently. New and more persistent spasms in my legs and back.
Man, I hate listening to myself go on about this but guess this is the place. It's probably time to get back in touch with the psychologist at the MS center

Most worrisome (to me, anyway) has been mood changes and speech difficulties that I have trouble describing. I had a very detailed psych eval a couple of years ago and passed with flying colors. That is, aside from being moderately depressed. That improved significantly when I was laid off from a job I hated anyway. I've never reacted well to ssris and don't have the patience to go through the motions with yet another psychiatrist.
It was when I found myself googling MS and suicide rates that I thought it was probably time to reconnect with adults other than my wife. I'm not seriously considering anything so drastic and selfish, but I found myself feeling more sympathetic towards people who do.

I'm glad you posted. Your signature really got my attention. A friend has been going on for a while about how great her anti-inflammatory diet has been for her rheumatoid arthritis and eliminated the need for meds. I'm due for my first round of rituxan in a week but know that I should have been paying much better attention to my diet all these years.
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Re: reengaging w/ ms stuff

Postby jimmylegs » Thu Apr 17, 2014 8:56 am

ugh no fun :S you can do lots for mood as well as physical stuff with a good diet. tons of help for you here :D

for goal setting, there's readily accessible standard (not necessarily optimal) daily nutrient intake targets available via www.whfoods.com, www.nutritiondata.com, and optimal serum nutrient levels at www.thisisms.com/ftopict-2489.html
i find its easiest to access whfoods info by google searching
whfoods zinc
(or whichever nutrient you're interested in) and then clicking on the link to the food nutrient chart.

easy starting point re inflammation, aim for a daily score of at least +100 (anti-inflammatory) when feeling bad, or at least +50 anti inflammatory per day when you feel great.

http://inflammationfactor.com/look-up-if-ratings/

my old roomie had a bipolar dx and there's a note on her file that her diagnostic manic episode may have been ssri induced. she was on a cycle of hospitalizations and while she lived with me i got her trained up on looking after her nutrient requirements. she hasn't been hospitalized since and has gotten away from the client mentality and is much more interested in long term wellness. i'm currently also working with a few other depression cases.. two involving suicide attempts - in all cases there are clear nutrient issues in the back story. it's a great thing to pay attention to as a preventative proactive measure!
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Re: reengaging w/ ms stuff

Postby lyndacarol » Thu Apr 17, 2014 9:48 am

SleepingMonkey wrote:I've got some new loss of coordination in my hands and legs that's making it tougher to keep up with two very active two year olds. Double vision isn't a new problem, but it seems tougher to shift focus to deal with sunlight and crowds recently. New and more persistent spasms in my legs and back.
Man, I hate listening to myself go on about this but guess this is the place. It's probably time to get back in touch with the psychologist at the MS center

Most worrisome (to me, anyway) has been mood changes and speech difficulties that I have trouble describing. I had a very detailed psych eval a couple of years ago and passed with flying colors. That is, aside from being moderately depressed. That improved significantly when I was laid off from a job I hated anyway. I've never reacted well to ssris and don't have the patience to go through the motions with yet another psychiatrist.
It was when I found myself googling MS and suicide rates that I thought it was probably time to reconnect with adults other than my wife. I'm not seriously considering anything so drastic and selfish, but I found myself feeling more sympathetic towards people who do.

I'm glad you posted. Your signature really got my attention. A friend has been going on for a while about how great her anti-inflammatory diet has been for her rheumatoid arthritis and eliminated the need for meds. I'm due for my first round of rituxan in a week but know that I should have been paying much better attention to my diet all these years.

Welcome again to ThisIsMS, SleepingMonkey.

"Everything You Want Your Doctor to Know about Vitamin B12"

http://www.youtube.com/watch?v=BvEizypoyO0

I highly recommend this 50-minute documentary from the filmmaker Elissa Leonard, featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

@1:46 "In 1948 scientists isolated a red crystalline pigment and named it vitamin B12. It is a primordial molecule responsible for the health of all the DNA in all our cells. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12."

Near the end you will find:

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Your GP can order a few tests to rule out a possible vitamin B12 deficiency – serum B12 test (at $90, it is one of the least expensive blood tests, and insurance should cover it); folic acid test; methylmalonic acid (MMA) test – urine test of MMA is recommended; homocysteine test. If you are found to have a B12 deficiency, injections of B12 or B12 lozenges will usually solve the problem. I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses, and work with your doctor.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: reengaging w/ ms stuff

Postby THX1138 » Thu Apr 17, 2014 9:52 am

Welcome SleepingMonkey :)
Monkeys are cool.
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Re: reengaging w/ ms stuff

Postby SleepingMonkey » Thu Apr 17, 2014 11:19 am

some great info already. B12 has been a concern for many family members, so I'll be sure to follow up on that. Much of this has been review of stuff I read long ago and forgot or didn't pay enough attention to the first time around.

I appreciate the warm welcome. There's lots of work to be done around here during the kids' naptime, but dedicating some time to this stuff more consistently should make the rest go more smoothly.

I've been on an almond kick lately. glad to see it listed as one of the good foods to keep around
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Re: reengaging w/ ms stuff

Postby jimmylegs » Thu Apr 17, 2014 11:43 am

re b12, have you and the rest of the family members been checked for parietal cell antibodies?

here's a prelimiary short list of test and targets

serum vitamin B12: aim for at least 500 pg/mL or 370 pmol/L.
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...
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Re: reengaging w/ ms stuff

Postby lyndacarol » Thu Apr 17, 2014 11:52 am

By the way, according to the book suggested, Could It Be B12? An Epidemic of Misdiagnoses, most labs have the reference range for B12 deficiency set too low. The authors recommend that the B12 level cut-off should be 550 pg/mL; if neurologic symptoms are present, they think the level should be maintained at 1000 pg/mL or more.

Also, if there is a B12 issue in the family, you may be especially interested when the authors recount (on page 61) the case history of Kathy. She was misdiagnosed with multiple sclerosis; years later a new doctor correctly diagnosed her with a familial form of B12 deficiency (she suffered from a hereditary defect of B12 metabolism called cobalamin G). She improved with weekly B12 shots and an oral medication; she began walking more easily. Her physician reported her case in the New England Journal of Medicine.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: reengaging w/ ms stuff

Postby jimmylegs » Thu Apr 17, 2014 12:19 pm

yep the reference range goes down as low as 180 pmol/L / ~ 240 pg/mL - purely based on hematological criteria eg increased mean corpuscular volume, not measures of cognitive function.

this is the reference that proposes 500 as a lower cutoff based on levels seen in three other countries at the time.

Are U.S. lower normal B12 limits too low? (1996)
http://www.ncbi.nlm.nih.gov/pubmed/8856015

the evidence quality is low (letter, case report).

if interested, TiMS has an entire section of the site devoted to b12: natural-approach-f27/topic18560.html
focused topics for other essential nutrients can be found here: natural-approach-f27/

i'm the other side of a LOT more science training than when i was dealing with my own b12 deficiency. just found this:

Vitamin B12 Deficiency and Multiple Sclerosis; Is there Any Association? (2012)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3354399/

think i'll head over to 'all things b12' to unpack it further
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