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My daughter (13) is being seen for possible MS. She's had so many odd symptoms. Less color in right eye (colors look duller), loss of sensation in right side of face - barely on forehead, middle ground near her cheek and barely anything on her jaw. Her hands and feet have gone numb. She's had horrendous eye pain and headaches s few times, though they've calmed down of late. Her tongue has gone numb. She's weaker on her right side. (Her arm shook trying to lift a half gallon of milk out of the fridge), etc. The list really goes on and on and on. Anyway, since this flare or attack started, it's progressed quite a bit and she's basically been laying around most of the time. Her brain MRI came back clear (though he missed a stone in her parotid so I'm not overly thrilled with the reading in general). Her full spine MRI isn't until Feb 1st. In the meantime, she did a little more around the house than usual the other day. It was a lot compared to what she's been doing but not much at all compared to "normal" activity levels, if that makes sense. (p.s. she was the poster child for ADHD energy levels - when I say "normal" I mean most people's normal, not her old level of activity). Anyway, the next day she woke up and all down her right side from the waist down she had stabbing, lightening bolt like pain in her hip, knee, and ankle. There was some muscle pain around the joints, but mostly it was nerve like pain. It wasn't one pain shooting through all three either, it was separate. She could barely walk and needed to use her forearm crutch we keep around for the random times she needs them. It lasted hours then went away as quickly as it came as usual. Another example is going to the doctors not long ago. We had to walk a little ways across campus to pick up some records, and by the time we got back to the garage she wanted me to carry her back to the car because she hurt. Is this all MS sounding? How can I help her? I've tried to encourage her to use her crutch or even a ultralight portable chair on heavy activity days or long walks, but as with most teens, she does not want to stand out in a "negative" way. Her Ortho doesn't want to start PT until we see what the spinal MRI says. Any tips, tricks, advice, etc would be very much appreciated!

hi and welcome how's her diet and lifestyle, if i may ask? i'm curious re her typical activity level prior to development of symptoms, dietary preferences, whether you have tracked if she is meeting minimum recommended daily amounts for essential macro and micronutrients, and whether she has been on any long term prescriptions or over the counter meds, also are there any other chronic reoccuring health idiosyncrasies that you would not necessarily ascribe to ms? what about types and frequency of colds or other infections, anything there? i ask all of these questions because there may be a few things you can do in the short term to address underlying health status, and which might address some of the symptoms your daughter is experiencing. it's wise to ensure optimal nutrient status before going in depth on a diagnostic process. doctors are not typically trained to identify or treat nutritional issues and are also unlikely to refer patients to nutrition specialists. the risk is having symptoms of nutrient deficit assigned to a medical diagnosis that is actually unrelated. ideally i would think you want the doctor to be making decisions based on any symptoms that are left after optimizing nutritional status. hopefully at a bare minimum your GP can arrange a referral to a nutritionist. and failing that there are all kinds of resources available to help you figure out action items you can take on at home

maybemsmom wrote:My daughter (13) is being seen for possible MS. She's had so many odd symptoms. Less color in right eye (colors look duller), loss of sensation in right side of face - barely on forehead, middle ground near her cheek and barely anything on her jaw. Her hands and feet have gone numb. She's had horrendous eye pain and headaches s few times, though they've calmed down of late. Her tongue has gone numb. She's weaker on her right side. (Her arm shook trying to lift a half gallon of milk out of the fridge), etc. The list really goes on and on and on. Anyway, since this flare or attack started, it's progressed quite a bit and she's basically been laying around most of the time. Her brain MRI came back clear (though he missed a stone in her parotid so I'm not overly thrilled with the reading in general). Her full spine MRI isn't until Feb 1st. In the meantime, she did a little more around the house than usual the other day. It was a lot compared to what she's been doing but not much at all compared to "normal" activity levels, if that makes sense. (p.s. she was the poster child for ADHD energy levels - when I say "normal" I mean most people's normal, not her old level of activity). Anyway, the next day she woke up and all down her right side from the waist down she had stabbing, lightening bolt like pain in her hip, knee, and ankle. There was some muscle pain around the joints, but mostly it was nerve like pain. It wasn't one pain shooting through all three either, it was separate. She could barely walk and needed to use her forearm crutch we keep around for the random times she needs them. It lasted hours then went away as quickly as it came as usual. Another example is going to the doctors not long ago. We had to walk a little ways across campus to pick up some records, and by the time we got back to the garage she wanted me to carry her back to the car because she hurt. Is this all MS sounding? How can I help her? I've tried to encourage her to use her crutch or even a ultralight portable chair on heavy activity days or long walks, but as with most teens, she does not want to stand out in a "negative" way. Her Ortho doesn't want to start PT until we see what the spinal MRI says. Any tips, tricks, advice, etc would be very much appreciated!

Welcome to ThisIsMS, maybemsmom. Once a mom, always a mom… I am a mom too, and although my son is the healthy adult (and I am the one with MS), I understand a mother's desire always to help her child – no matter the age.

The numbness in your daughter's legs and hands is the textbook definition of "peripheral neuropathy." This is a common symptom in many conditions; in fact, all her symptoms are found in other conditions, other than necessarily MS – MS is a diagnosis of exclusion, made when the others have been ruled out. Undoubtedly, her doctors are in the process of ruling out these other more likely causes. In investigating the cause of peripheral neuropathy, 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. A simple B12 blood test alone is not adequate to rule out a possible deficiency; this test is often inaccurate. Even taking a vitamin B supplement before testing can skew the results. If her pediatrician or GP is unwilling to screen thoroughly for a possible deficiency, request a referral to a hematologist. Any person at any age (even 13) can develop a B12 deficiency.

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.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. Jeffrey J. Stuart, D.O. (This may be available through your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

Thank you for the responses! They have not checked B12 serum levels, but said her MRI didn't show her lacking. She was a tad anemic when this first started but it's been corrected since. I also started her on Vitamin D just to be safe (with her docs okay). She was very active. She was very fit and cheered at her school. She'd wake up at full speed and go that way all day long. Her diet is pretty good. Very little sugar, heavy focus on lean meats and veggies. It's not perfect, mind you, but pretty good.

She does have Autoimmune Thyroid Disease, which they found trying to find a cause for all of this. However, her levels were actually okay. Just barely high on TSH and normal free T4. She did have antibodies (TPO and TgAB), so they started her on a super low dose levothyroxine that got her tsh in normal range in the first six weeks. Her Endo does not think her thyroid is the cause of any of her symptoms as her levels have been pretty good and nowhere near what they'd expect to cause these symptoms. They found a nodule they are doing a biopsy on, but again, no one thinks her thyroid has any relation to anything going on. It was just incidentally found (the high tsh on blood work and the nodule on imaging).

As for other medicines she hasn't really been on many. She has taken Zantac for reflux Zyrtec for allergies.

She did have a seizure disorder. In first grade she had a Grand Mal. They never figured out really what that was about, but put her on Keppra for a year, and weaned her off. She had no more problems so they said she'd outgrown whatever it was. I wondered if her hormones didn't kick up that dust, but many of her symptoms aren't explained by seizures alone.

They have thrown connective tissue disorder out there because she's had numerous avulsion fractures, etc., but they don't think it's related to this so far. They also found she has spina bifida , which is one reason they are checking her spine. Her hips and muscular issues line up perfectly with what you'd expect from spina bifida - but it's unusual for it to go undiagnosed so long unless it's occulta, and then it's unusual for it to cause a problem.

She's seen cardiology and had an ekg and ultrasound of her heart. Neurosurgeon who said MRI of brain was clear and who is checking her spinal cord next. Her Endo, her PCP, her Ortho. They've taken so much blood from that kid and ran so many test. I really want for them to just figure it out so she can get better, or at least get peace of mind. It's hard to accept and adapt to the unknown.

maybemsmom wrote:As for other medicines she hasn't really been on many. She has taken Zantac for reflux Zyrtec for allergies.

Acid blocking drugs, such as Zantac, can interfere with both vitamin B12 and magnesium causing levels to be low.

I didn't know that. Thank you for the heads up! I will ask her doctor about that. She does take magnesium and b12 supplements along with her vitmain c, omega 3, and multi. That doesn't mean her body is getting much from those though. Thanks again! I'm going to insist they check the levels, and when possible, to make sure the body can use them right. (I think I remember reading something about a test to see if the body uses b12 correctly.) It would be wonderful if it was something easily corrected! Though the thought of nerve damage from it not being caught is no small thing.

maybemsmom wrote:She does take magnesium and b12 supplements along with her vitmain c, omega 3, and multi. That doesn't mean her body is getting much from those though. Thanks again! I'm going to insist they check the levels, and when possible, to make sure the body can use them right. (I think I remember reading something about a test to see if the body uses b12 correctly.) It would be wonderful if it was something easily corrected! Though the thought of nerve damage from it not being caught is no small thing.

Taking a vitamin B supplement before testing will skew the test results. Since your daughter takes B12 supplements and a multivitamin, which probably contains B vitamins as well, serum B12 test and folate test results will be unreliable.

Discuss the HoloTranscobalamin (HoloTc) test with her doctors. This test indicates if B12 (a.k.a. cobalamin) is being carried on the proper protein transporter (transcobalamin) in order to get the B12 into the cells where it can be used.

Vitamin B12 deficiency has a connection to everything you have mentioned: anemia (This can be corrected – often with folate, but folate will not correct the neurological problems if the cause of the anemia is a B12 deficiency.), thyroid disease, seizures, connective tissue problems (collagen), fractures (osteopenia/osteoporosis), and spina bifida (This has a well-known, major link.).

I do not mean for the following video to scare you – it recounts 4 extreme cases (which is not the situation with your daughter): Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12"

I urge you to watch this 50-minute documentary featuring Sally M. Pacholok, RN, BSN, & her husband Jeffrey J. Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist, Yale Medical School; Ralph Green, M.D., hematologist, UC Davis; Donald Jacobsen, PhD, Cleveland Clinic (Homocysteine Research Lab)

THANK YOU! I will ask specifically for that test when we see the neuro tomorrow. I'm watching that video now. This board, and it's posters, are fantastic! Thanks again!

hi again

i personally would not be comfortable using mri results as a way to evaluate b12 status :S by the time problems would show up on an mri, she would have to have been markedly deficient for a long time. question: can you clarify what kind of anemia she had and how it was corrected, specifically? good to hear about the vitamin d3. q: did they recommend any other complementary supplements to be taken in combination with the d3? re zantac, it's always wise to evaluate medicines for possible nutrient interactions. personally, i had my worst problems with reflux after being on vitamin d3 with insufficient and improperly timed complementary mineral intakes.

re autoimmune thyroid disease, you may want to look at serum zinc, serum selenium and serum iodine levels. there may be useful dietary approaches that could help improve thyroid function, as well as other body functions which utilize the same nutrients. re "no one thinks her thyroid has any relation to anything going on" it will be interesting to see whether there might be some common nutritional threads.

thiamin could be something to consider for possible links to the early grand mal seizure episode. status of minerals associated with bone health couldn't hurt either. in fact, given the vitamin D3 supplementation i would suggest that evaluation of serum calcium, serum magnesium and serum zinc would be useful.

a very close family friend was just diagnosed with spina bifida at age 27, due to the problematic symptoms she's been experiencing. uncommon sure, but out of the question, not at all. it's a birth defect that is known to have nutritional associations.

without having to take any more blood, two easy first steps would be to start looking at balancing any supplemental intakes to make sure nothing is being adversely affected, and to evaluate her diet for intakes of essential vitamins and minerals to ensure there are no unexpected gaps.

blood tests are definitely useful but often come back with misleadingly 'normal' results. it's always best to know exactly what your specific level is, and not to take the 'normal ranges' seriously. far better to aim for an 'optimal' serum level, since established 'normal' ranges are known to contain treatable deficiency states for a number of different nutrients.

i'm glad to see the various supplements in the mix. may i ask about the daily forms, doses and timing of all the various supplements she is on at the moment? there could be some telling info there.

overall, when there are concerns about the body not using something correctly, i would tend to look at the wider nutrient picture. the body requires a full complement of essential macro and micronutrients for processes to run properly. as a personal example, i used to have very high folate levels and an associated itch from a b complex containing 1000 ug of folic acid. later i identified and corrected a zinc deficiency, and thereafter i noticed i did not have the itch reaction any more, when taking a high-folic b complex product. i also used to have 'ms average' uric acid levels, which shot up to healthy control levels after i fixed my zinc problem. i can't be sure exactly which nutrient is responsible, but after working on my nutrient status in general, my serum response to dose of d3 has more than tripled.

young people with high activity levels and neurological symptoms show up on here all the time. your daughter's diet does sound good on the surface, but you might find it informative to evaluate her daily intakes in terms of each food's contribution to daily minimum requirements for essential vitamins and minerals.

so, what are we up to so far... b12, possibly iron, zinc, selenium, iodine, b1, d3 and magnesium.

consider also this position paper on nutrition and athletic performance:
"The most common vitamins and minerals found to be of concern in athletes’ diets are calcium and vitamin D, the B vitamins, iron, zinc, magnesium, as well as some antioxidants such as vitamins C and E , beta carotene and selenium (46-50)." read the rest here http://www.dietitians.ca/downloadable-c ... paper.aspx

quite a bit of overlap there. so, here are some related charts in case you are interested in working through a typical day's food to see the amount each serving contributes to daily minimum requirements. keep in mind that those list daily requirements are minimums for average joe, and will therefore be on the low side if you're evaluating for an athlete.

healthy b12 foods http://www.whfoods.com/genpage.php?tnam ... #foodchart (eg sardines, salmon)
healthy iron foods http://www.whfoods.com/genpage.php?tnam ... #foodchart (eg spinach, lentils)
zinc http://www.whfoods.com/genpage.php?tnam ... #foodchart (eg beef and spinach)
selenium http://www.whfoods.com/genpage.php?dbid ... #foodchart (eg tuna, shrimp)
iodine http://www.whfoods.com/genpage.php?tnam ... #foodchart (eg sea veg, scallops, cod)
b1 http://www.whfoods.com/genpage.php?tnam ... #foodchart (eg sunflower seeds, navy beans, black beans)
d3 http://whfoods.org/genpage.php?tname=nu ... #foodchart (more salmon and sardines)
magnesium http://www.whfoods.com/genpage.php?tnam ... #foodchart (pumpkin seeds, spinach and chard)

note that even though clams are not specified on the iron food chart, and oysters are not shown on the zinc food list, that these are in fact particularly rich sources of these minerals. elsewhere on the site, this oyster&clam chowder recipe is promoted:
http://www.whfoods.com/genpage.php?tname=recipe&dbid=32

please don't fall into the trap of looking for a single magic bullet. when i was diagnosed in 2006 i wanted it all to be about b12, and in fact i was severely deficient. but it most definitely was not all about b12, as i've learned over and over again, since. time, testing, and a mountain of academic reading has taught me how complex and interrelated all these issues are!

well, that was a big one. i have to move on to other things now but hope you find the above useful