New from Miami, Florida

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New from Miami, Florida

Postby WendyCC » Fri Dec 02, 2016 7:10 am

Hello, my name is Wendy and my husband was diagnosed in 2009 when he was 33 years old. We live in Miami and have 2 boys, 11 and 3.

My husband is a musician, he founded and directs an organization dedicated to percussion. He keeps really busy and active, and is an amazing dad. I worked in architecture many years, and although I always helped him, I left a firm at the start of this year to work for his organization full time. We love it because we're always together. That works for us because we've been together since I was 15 and he was 17. We're very lucky he's done so well so far after his dx.

That said, there are waves of setbacks which always prompt me to dive deep into "research mode". Our first was at the start when his worst symptoms were numbness and extreme fatigue. I don't think I have to explain here how this type of fatigue differs from regular fatigue. It was debilitating, disruptive to his normal life, and made him very depressed. And it was unpredictable. One week we were riding bike all over DC and the other he was in bed for 2 days straight to survive the week. No one understood. It was a rough time. Then our youngest was born, and it took him one year to sleep through the night. Not sleeping well was extremely destructive to my husband and it also coincided with the first year of his school/organization. Amazingly, diet and a supplement routine (and that cute baby finally sleeping!) did the trick and his fatigue was gone.

However the last 2 years, although he has plenty of energy, has even been working out on and off, and is otherwise symptom free (numbness gone), his legs have deteriorated (spasticity). We noticed the line: summer of 2014. We went back to DC and had to use a wheelchair at the museums and taxis to get around. When you repeat the same activity years layers it's when you can see changes the most. Since then it's an up and down with his legs. Good weeks and bad weeks. Overall there is a different nature to his gait, even in good weeks. And long distance walking is out of the question.

So this is my new focus, to find out how to help him with this which brought me here. I found a thread where it mentioned too much vitamin D3 could increase spasticity in legs. And the timeline makes sense for him to be true. However, his almost miraculous progress in all else is also due to diet and supplements so that's the balance we have to figure out.

There is also the possibility that this is just his illness progressing, differently at each stage. I accept the randomness, but always try to continue reading and having a plan. His doctor wants to try and see if a Baclofen/Ampyra routine might help. This will be the only time other meds have come into the picture so I'm concerned of side effects. He is otherwise a very healthy person. Eats healthy, keeps a good weight. Nothing else going on except for his MS. Last time she suggested meds for his fatigue we solved it in alternate ways. I'd like input in these meds too because maybe our resistance is unwarranted and he's missing out on something that could make a big difference.

I should add that he has been on Copaxone from the start, and has had stable yearly MRI's since time of dx. His doctor suspects the illness began in his late 20's until a major event brought it to the surface. He had caught a very bad cold that fall of 2009, and had a high fever. The fever suddenly brought up all the worrisome signs of MS. MRI's confirmed small lesions in almost all areas along the spine, plus some in brain and eye area.

Thank you very much for listening!

Wendy
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Re: New from Miami, Florida

Postby lyndacarol » Fri Dec 02, 2016 9:36 am

WendyCC wrote:Hello, my name is Wendy and my husband was diagnosed in 2009 when he was 33 years old. We live in Miami and have 2 boys, 11 and 3.

My husband is a musician, he founded and directs an organization dedicated to percussion. He keeps really busy and active, and is an amazing dad. I worked in architecture many years, and although I always helped him, I left a firm at the start of this year to work for his organization full time. We love it because we're always together. That works for us because we've been together since I was 15 and he was 17. We're very lucky he's done so well so far after his dx.

That said, there are waves of setbacks which always prompt me to dive deep into "research mode". Our first was at the start when his worst symptoms were numbness and extreme fatigue. I don't think I have to explain here how this type of fatigue differs from regular fatigue. It was debilitating, disruptive to his normal life, and made him very depressed. And it was unpredictable. One week we were riding bike all over DC and the other he was in bed for 2 days straight to survive the week. No one understood. It was a rough time. Then our youngest was born, and it took him one year to sleep through the night. Not sleeping well was extremely destructive to my husband and it also coincided with the first year of his school/organization. Amazingly, diet and a supplement routine (and that cute baby finally sleeping!) did the trick and his fatigue was gone.

However the last 2 years, although he has plenty of energy, has even been working out on and off, and is otherwise symptom free (numbness gone), his legs have deteriorated (spasticity). We noticed the line: summer of 2014. We went back to DC and had to use a wheelchair at the museums and taxis to get around. When you repeat the same activity years layers it's when you can see changes the most. Since then it's an up and down with his legs. Good weeks and bad weeks. Overall there is a different nature to his gait, even in good weeks. And long distance walking is out of the question.

So this is my new focus, to find out how to help him with this which brought me here. I found a thread where it mentioned too much vitamin D3 could increase spasticity in legs. And the timeline makes sense for him to be true. However, his almost miraculous progress in all else is also due to diet and supplements so that's the balance we have to figure out.

There is also the possibility that this is just his illness progressing, differently at each stage. I accept the randomness, but always try to continue reading and having a plan. His doctor wants to try and see if a Baclofen/Ampyra routine might help. This will be the only time other meds have come into the picture so I'm concerned of side effects. He is otherwise a very healthy person. Eats healthy, keeps a good weight. Nothing else going on except for his MS. Last time she suggested meds for his fatigue we solved it in alternate ways. I'd like input in these meds too because maybe our resistance is unwarranted and he's missing out on something that could make a big difference.
Welcome to ThisIsMS, Wendy.

I admire your attitude and support for your husband; it is apparent that you love him a great deal. And when you say you are into "research mode," I know you are a woman after my own heart.

My current research focus is on vitamin D, which is used in every cell, every tissue, every system in the body for proper functioning. Now, before you say, "But, we live in Miami," please realize that over 1/2 of Americans are deficient in vitamin D; and some of those live in Florida.… even in Hawaii:

Severe vitamin D deficiency in Hawai'i: a case report. (2006)
M Bornemann
http://www.ncbi.nlm.nih.gov/pubmed/16602611

Severe vitamin D deficiency would appear unlikely to occur in Hawai'i, which has abundant year-round sun exposure. This case report of a woman with no obvious risk factors for vitamin D deficiency who was found to have severe vitamin D deficiency and coexisting primary hyperparathyroidism should alert health care providers to be more aware of vitamin D deficiency in Hawai'i.

If you noticed that "diet and a supplement routine did the trick" for your husband's extreme fatigue 3 years ago, perhaps he was increasing intake of calcium, magnesium and vitamin D:

Multiple sclerosis: Decreased relapse rate through dietary supplementation with calcium, magnesium and vitamin D (1986)
P Goldberg, MC Fleming, EH Picard

I have no medical background, but I am trying to explain to myself the thread, which mentioned "too much vitamin D3 could increase spasticity in legs." Vitamin D has several cofactors: vitamin A, zinc, and magnesium. Magnesium is used in vitamin D metabolism (used in the binding of vitamin D to the transport protein and used in the conversion of vitamin D into it active, hormonal form). If one takes high dose vitamin D3 WITHOUT increasing magnesium intake, the D3 will use it and there will not be enough left for the bones and muscles.

"Eating healthy" may not be supplying enough magnesium for your husband:

Dr. Mercola & Dr. Dean on the Importance of Magnesium (31 min.),
presented in 2013
https://www.youtube.com/watch?v=d55y4yOnn3c

@24:17 (https://youtu.be/d55y4yOnn3c?t=1457) You're lucky if you get 200 mg of magnesium from your diet, so you do want to supplement. I should mention a little more about that. Some people feel that, "well, I eat organic. I should be getting enough magnesium." However, if your organic farmer does not use rock salt or rock powder, rock dust – I think it's called rock dust – if they don't use magnesium fertilizer, the soil is not going to have magnesium in it for the plants to take up and create the magnesium you need in your diet. So, this is the state we're at right now is: a person should try to get their calcium from the diet and take magnesium supplements.

Increased magnesium intake often improves spasticity for some people. Jimmylegs and others have posted much about magnesium here at ThisIsMS.

Poor Vitamin D Absorption Is Usually Not the Problem
Kerri Knox, RN
http://www.easy-immune-health.com/vitam ... ption.html

"Magnesium Intake
While not technically a factor in vitamin D absorption, magnesium is required in order for Vitamin D to be converted into its 'active form' in the blood. So, if you are magnesium deficient, then you will likely have difficulty converting vitamin D into a usable form in your body. In fact, many of the so-called side effects of vitamin D, like:
• Constipation
• Muscle Cramps
• Insomnia
• Anxiety from Vitamin D
• Heart Palpitations
are actually Signs of Magnesium Deficiency and often go away if Magnesium and Vitamin D are taken TOGETHER. To avoid problems, I suggest never taking large doses of vitamin d without also taking magnesium, ..."

Here are my suggestions:
(1) If your husband has not had the vitamin D blood test called "25-Hydroxy D," call his GP and request one. (Also request your own copy of any test results – it is always important to have the actual numbers.) Nutrient deficiencies should be ruled out as possible causes for any symptom he has – not EVERYTHING has to be due to MS.
(2) if he has not had a magnesium blood test, request one.
(3) While he's at it, ask for a serum zinc test as well.

There is controversy over which magnesium blood test should be used: serum magnesium test OR the RBC (red blood cell) magnesium test. Here is the argument for RBC:

The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for "normal" results. (2010)
Clinical Chemistry and Laboratory Medicine, 48(3), 323-327.
Y Ismail, AA Ismail, AA Ismail
http://www.ncbi.nlm.nih.gov/pubmed/20170394

Conclusions: The perception that "normal" serum magnesium excludes deficiency is common among clinicians. This perception is probably enforced by the common laboratory practice of highlighting only abnormal results. A health warning is therefore warranted regarding potential misuse of "normal" serum magnesium because restoration of magnesium stores in deficient patients is simple, tolerable, inexpensive and can be clinically beneficial.

Please let us know how things go; we do understand and care.
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Re: New from Miami, Florida

Postby jimmylegs » Fri Dec 02, 2016 2:19 pm

yassss ismail ^3 love that one. although it makes no argument whatever re RBC. just that you need to understand what you are dealing with when it comes to a serum mag result. no need to spend a ton of cash on RBC testing imho.

hi wendy can you clarify:
"I found a thread where it mentioned too much vitamin D3 could increase spasticity in legs. And the timeline makes sense for him to be true. However, his almost miraculous progress in all else is also due to diet and supplements so that's the balance we have to figure out"

what's the regimen by and large iima? to my eye/brain/experience it makes all the sense for excess *supplemental* d3 to increase spasticity.

also re " He is otherwise a very healthy person. Eats healthy, keeps a good weight."

would you be able to confirm with certainty that he meets daily recommended intakes for all recommended essential macro and micronutrients? usually tracking to that level of detail is kind of off people's radar. i am curious if it's the same in your case.

the other question i have is to what degree you've dug into the nutritional 'usual suspects' wrt ms in particular.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: New from Miami, Florida

Postby ElliotB » Fri Dec 02, 2016 5:25 pm

Hi and welcome to TIMS, I am just a bit North of you (North Broward County).

Since you are doing research, have you done any on gluten and sugar? Also, please be aware that 'Eating healthy' means different things and to different people. Few agree on what eating healthy really is. So many diets, especially for MS, are so different from each other, in some cases, dramatically different from each other.
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Re: New from Miami, Florida

Postby jimmylegs » Fri Dec 02, 2016 6:46 pm

good point - what with gluten and sugar both being recognized antinutrients both can cause issues. personally, i used to react badly to gluten when zinc deficient. i had more allergic-type things in general during that time. more skin issues too. glad i can handle gluten now that zinc is sorted out, nooooooo problem. but i never overdo it. todays grains were steel cut oats and brown rice.

weird aside: when wheat plants are zinc deficient, their gliadin to glutenin ratio gets higher (making them more likely to cause bad reactions in people). interesting stuff

Zinc nutrition influences the protein composition of flour in bread wheat (Triticum aestivum L.)
http://www.sciencedirect.com/science/ar ... 1007000720
"Foliar Zn applications doubled grain Zn concentration, reduced the proportion of gliadin and SDS-unextractable polymeric protein and increased the proportion of SDS-extractable polymeric protein"

ooh fun!! this one is new since last time i bothered to look into this line of research inquiry

Reduced-Gliadin Wheat Bread: An Alternative to the Gluten-Free Diet for Consumers Suffering Gluten-Related Pathologies
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3951262/
"Conservative estimates indicate that celiac patients could safely consume 67 grams of bread per day that is made with low-gliadin flour. However, additional studies, such as feeding trials with gluten-intolerant patients, are still needed"

wonder if the wheat they used was just really well supplied with zinc nutrition
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: New from Miami, Florida

Postby joeymia » Tue Jan 17, 2017 10:24 am

Hi Wendy,

I am also from Miami just curious because I rarely speak with people with MS. Do you know of any active support groups here or therapists with MS experience? I've had a rough year after being with my fiance for 3 symptom free great years. The last year has been rough and I was wondering what resources we have available locally.
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