Mom recently diagnosed

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Mom recently diagnosed

Postby cimciminy » Fri Apr 11, 2014 5:32 pm

Hi everyone,

My mom was recently diagnosed with progressive MS, and she has been declining very quickly since the diagnosis. As her daughter, I am unsure of what to do and how to handle the news. I want to be there for her as much as possible, and I try to talk to her but she doesn't want to talk to me about it. She is embarrassed to go out in public, and has stopped hanging out with her friends. No matter what I do to try and support her and give her my love, she doesn't want to hear it or talk about it. She isn't going to her parents' 60th anniversary party because she is embarrassed. I don't know what to do to help her and I don't know how to deal with the news. Any and all advice would be appreciated.
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Re: Mom recently diagnosed

Postby lyndacarol » Fri Apr 11, 2014 7:03 pm

cimciminy wrote:Hi everyone,

My mom was recently diagnosed with progressive MS, and she has been declining very quickly since the diagnosis. As her daughter, I am unsure of what to do and how to handle the news. I want to be there for her as much as possible, and I try to talk to her but she doesn't want to talk to me about it. She is embarrassed to go out in public, and has stopped hanging out with her friends. No matter what I do to try and support her and give her my love, she doesn't want to hear it or talk about it. She isn't going to her parents' 60th anniversary party because she is embarrassed. I don't know what to do to help her and I don't know how to deal with the news. Any and all advice would be appreciated.

Welcome to ThisIsMS, cimciminy.

In my opinion, and in the opinion of the authors of Could It Be B12? An Epidemic of Misdiagnoses, every person recently diagnosed with MS should be tested for a possible vitamin B12 deficiency. To fail to do so is downright negligence! Even in investigating the cause of peripheral neuropathy (numbness/tingling in the feet, legs, hands, or arms), the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B
Please note that the first blood test the U of Chicago suggests is for vitamin B12. I definitely think this is the place to start. There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

You may also find the information in the following video useful: "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."

If your mother is found to have a vitamin B12 deficiency, it is easily treated with B12 supplementation (shots or lozenges). Some people have started improving in a matter of a few days or a few weeks. If your mother cannot be assertive and request that her doctor look into this possibility, are you able to speak to her doctor, ask that he consider a B12 deficiency, and even be a little "pushy" about it? Watch the video, read the book mentioned above yourself or give a copy to her doctor. YOU may be the one to save her.
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Re: Mom recently diagnosed

Postby jimmylegs » Sat Apr 12, 2014 5:28 am

hi cim and welcome to the forum. sorry to hear about your mum. i'm not sure if your mum will want to hear treatment info given that she is still processing the diagnosis, but for when she does come out of it a bit, here is some more info:

there are quite a few nutritional issues associated with ms. of these, vitamin b12 deficiency is the oldest and most widely known. it is an established differential diagnosis for ms. dietary deficit is one potential reason for b12 insufficiency or deficiency; pernicious anemia is another major one.

b12 is definitely NOT the only thing to consider and certainly should not be emphasized to the exclusion of other essential nutrients.

i am not sure which of these could be the most important to someone with a primary progressive ms diagnosis, but regardless here is a list of specific serum nutrient levels seen in average healthy controls - the average ms patient's levels are lower than these:

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 copper: aim for 17.3-18 umol/L (or 100-114 ug/dL). ...
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL).
serum selenium: two reference ranges found..
1..........0.90 to 2.00 µmol/L (adults)
..........< 0.3 µmol/L (in adult) - supplementation may be required
..........> 2.5 µmol/L (in adult) - possible toxicity
2..........1.02 to 1.91 µmol/L, OR 80 to 150 µg/L (molecular weight of Se is 78.96)
serum calcium: just a link to p. 11 for now, more later: regimens-f22/topic2489-150.html#p57111
serum uric acid: aim for 290-300 umol/L (about 5 mg/dL).
serum hemoglobin: at least 13
serum ferritin: i used to go for 100, now I go for 80 because some studies have shown increased disease risk at levels 80 and higher.

just to unpack the b12 side of things a little, here are some links:
earlier TiMS discussion on the b12/pernicious anemia distinction
2006 general-discussion-f1/topic2107.html#p14124

2006, establishing 500 pg/ml as a lower serum cobalamin target
post14161.html?hilit=pernicious#p14161

an example of why we don't want to look at single nutrients without considering interactions:
Zinc Metabolism in Hepatic Dysfunction: Serum Zinc Concentrations in Laënnec's Cirrhosis and Their Validation by Sequential Analysis
http://www.nejm.org/doi/full/10.1056/NE ... 8302550901
The serum zinc concentration has been reported to be decreased in several diseases, notably pernicious anemia.5

Metalloenzymes and myocardial infarction: malic and lactic dehydrogenase activities and zinc concentrations in serum
http://www.nejm.org/doi/pdf/10.1056/NEJM195609062551001
The serum concentration of zinc is decreased in several other pathologic states, notably cirrhosis of the liver and pernicious anemia.

so. all that said, i am wondering whether you have any influence on what your mum eats? if you are helping out by taking food, you could perhaps have some influence on her state of mind and body without really having to talk about it. any chance you could introduce a few dietary changes, aimed at improving her mood at the very least?
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Re: Mom recently diagnosed

Postby victoriagrace1 » Sun Apr 13, 2014 12:15 pm

Hi, When I was diagnosed I thought my life had ended but my Husband got me a book by Judy Graham Multiple Sclerosis Naturally which changed my life I couldn't put it down it has such positive information I still read it, it helps to keep me positive which is great for anyone with MS, perhaps it might help your mum and her Family.

Sue
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