Please help me cope with my symptoms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Please help me cope with my symptoms

Postby Lostpuppy » Sat May 12, 2018 12:28 pm

I think my anxiety is going to get the best of me before my medical issues. In August 2017 I was diagnosed with crohns they told me I needed Humira which I started in December and stopped on Feb 1 due to neurological issues. My left leg has strange pressure feeling on my hip and I get tlngling and tightness in my calf and toes get cold feeling which hurts. I also get tingling in the right side of my head which comes and goes. I did have ice pic like pains and electrical shocks in my head back in March but I haven’t felt that again thank goodness.
I finally got into a MS specialist the other day. He says we need to do another MRI in the end of August and it could either, get better by then, stay the same for ever or turn into progressive MS. Of course I think the worst. My spinal cord shows no lessions but the brain shows a lot of little ones but nonspecific for the most part.
What should i be telling myself when I feel the tingling in my head? Lately I just start crying and wish I never took the medication. I think about how it may get worse and worry I won’t be around for my young kids and if I do stay around how I will just feel tourchered.
Anything anyone can tell me to help with my anxiety? Each day seems like an eternity.
Thanks in advance.
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sat May 12, 2018 1:33 pm

target 400 mg daily magnesium from food. it will do WAY more for you than just deal with anxiety, but you can expect that will be a noticeable effect.

http://www.whfoods.com/genpage.php?tnam ... #foodchart

the greens listed only have that much in a 1 cup serving after being boiled down (1 min for spinach, 3 min for chard) so they're best used either as a side dish or in spinakopita type dishes. as long as you can drain out the boiling water - without draining, it will have higher concentrations of oxalic acid than you want in diet.

a daily quarter cup of trail mix made with mixed nuts and seeds can be viewed almost as a natural multivitamin/mineral (but the calories... keep it to a quarter cup!). i mention this here because 1/4 c of pumpkin seeds alone gets you half way to your daily mag needs (as long as you don't have ongoing mag depletion issues to contend with, that is)

if you cant get there with food, top up with a supplement (eg if you have food preference issues, absorption issues, a diagnosis consistent with low magnesium (like ms), are stressed either physically, emotionally or mentally, are very active (loss through sweat), take certain medications (like PPIs) or supplements (vit d3), consume certain antinutrients (eg alcohol, soft drinks) etc etc etc).

pills (some forms like magnesium oxide are a waste of time unless you want a laxative). for absorption, this is one i like:
http://orangenaturals.com/essential/mag ... ate-200mg/

drinks
http://www.trymagpop.ca/ (same form as above)
https://naturalcalm.ca/product/natural- ... te-powder/ (called natural CALM for good reason - form not quite as soluble/absorbable as above, but still good)

baths
either plain old epsom salts (magnesium sulfate - ok), or magnesium chloride flakes (better but i have not seen in a store to date, looks like online would be easy though)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Please help me cope with my symptoms

Postby ElliotB » Sat May 12, 2018 3:55 pm

Welcome to TIMS. Here are some general tips: Remove all stress from your life. Exercise for several hours every day (light exercise is fine), Sleep around 8 hours per day. Make sure you are giving your body the nutrition it needs. What diet do you follow? Do you take supplements?

What state is your overall health? Have you had general blood work done recently?
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Re: Please help me cope with my symptoms

Postby NHE » Sun May 13, 2018 12:59 am

A potential vitamin B12 deficiency is one of the first things to test for when one is experiencing neurological symptoms prior to other possible diagnoses. Standard tests for B12 deficiency include red blood cell folate, homocysteine and methylmalonic acid in addition to B12. You'll want your B12 level to be around 500-1000 pg/mL. Have you had B12 checked yet?
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sun May 13, 2018 1:42 am

Jimmy and Elliot

Thank you both so much for your responses. I feel so alone with this right now.

I am currently on the SCD diet. I’ve been doing this diet about a month and it is helping with the crohns. It is very restrictive with the theory to starve the bad bacteria by not eating sugar, grain, starch, soy or dairy. So you are left with meats, fish, vegetables and fruits and nuts. Honey is also allowed. I have been following this very strictly.

My general health is ok. I am going to be 50 next month. I used to work out regularly until I last year. I have a gym in my basement. I will start again tomorrow. I haven’t wanted to do anything when I don’t feel well. I just sort of start loosing control in my head because I don’t think that there is anything I can do to change things. I will try to push through. It’s stuff like this I need help with.

I have way too much stress in my life. Not sure the easy fix for this. Besides the fact that my job is stressful. My family situation is much worse. It is so stressful. Not sure I want to put it out here but my wife has OCD and mood issues. My son is 11 has ADHD and always wants to do the opposite of what he should or is asked to do. My daughter is 14 and is focused on getting good grades and lays low when my wife is yelling. There are good days with my family but I wish there was less yelling. I have just been trying to avoid conflict and arguments as a way to keep the stress down.
How important is reducing stress? Do you recommend meditation, or something else in addition to exercise? I am starting to think about antidepressants or something but I am really medication adverse.

My neurologist ran about 20 blood test all came back fine (including vitamin B12- NHE) but I was low on Vitamin D. I need to get my cholesterol checked.
My current supplements are omega 3 fish oil, vit D, L glutamine, flaxseed oil and turmeric.

Anything I’m missing that you think is important?

I will look into magnesium and the other items like the epsom salt bath. I recently found a local natrualpath who helps people with Chinese herbs and diet. Any thoughts on whether this can help with MS symptoms?

Thanks again for your help.
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Re: Please help me cope with my symptoms

Postby NHE » Sun May 13, 2018 1:47 am

Lostpuppy wrote:My neurologist ran about 20 blood test all came back fine (including vitamin B12- NHE) but I was low on Vitamin D. I need to get my cholesterol checked.
My current supplements are omega 3 fish oil, vit D, L glutamine, flaxseed oil and turmeric.

Anything I’m missing that you think is important?

Do you have your B12 test results? If so, what were they?
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sun May 13, 2018 5:51 am

sounds like the whole family would benefit from concentrating on its mag intake and status. go to google scholar and enter ocd and magnesium, adhd and magnesium.
magnesium deficiency is used as a model for depression, to test the efficacy of antidepressant drugs. don't go for the pharma before ensuring mag repletion. sometimes drugs are known to work *because* they improve nutrient status. much better to just nourish yourself properly.
if you're low on d3 you are likely to also be low on magnesium.
if you supplement d3 alone, you can make a pre-existing mag issue worse.
epsom salts are just more magnesium - specifically magnesium sulfate.
'normal' b12 can be suboptimal. it's one of many nutrients to pay attention to with ms, and an optimal level would be at least 500 pg/dl
b12 deficiency and magnesium deficit are both part of my own history. correcting b12 did nothing for anxiety. correcting low magnesium made lifelong status quo anxiety melt away, and it wasn't even the reason i was taking extra mag. just an unexpected and excellent side benefit.
i saw my own naturopath twice. wasn't impressed. she also had an ms dx so i had had high hopes. she has declined over the past decade and the last time i saw her she was in a wheelchair. any time i've had an issue, nutrition has been at the bottom of it.

i just read and responded to your pm - you may find this set of search results interesting (#4, 5 and 6 in particular):

https://bit.ly/2rFbcGZ
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sun May 13, 2018 6:24 am

Ok. I have my blood test. vitamin B12 is 511 pg/ml. The folate is 8.1 ng/ml.
Vitamin D, 25 hydroxy is 23.4.
They didn’t test for magnesium. My wife does take magnesium. We have Natures Made High potency Magnesium. 400/mg. Do you think this is good magnesium for me to supplement?

I too agree that what you eat could help. I recently watched the magic pill on Netflix. I recommend it. It talks about how modern food (and all the sugar) is the cause for many illnesses and how eating a certain diet can virtually cure many illnesses including breast cancer. I wish I tried diet before I did Humira but my GI told me diet had nothing to do with it.

Thanks you all for your help. Also looking for mental tips for when I am feeling symptoms. Anything that helps you get through it? Like I’m going to be fine... it’s just some numbness it will go away? I tend to just want to think how my life is coming to an end.

Oh. And I have to prepare for a presentation I have to give on the new tax law to a bunch of bankers In NYC on Tuesday. Just hard to stay focused. And I blew mother’s day. Sorry for venting. Thanks again.
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sun May 13, 2018 7:01 am

ah numbers, awesome. b12 level is solid.
25(OH)vitD3 units? ng/ml? if so, could go to 50 *but only with proper attn to cofactor status*

i cant find any detail on the chemical form of magnesium used in nature's made. super fishy. any product worth its salt should proclaim the chemical form front and centre - like the examples i posted above.
does it have more info on the actual bottle? i'd be surprised if it's not a legal requirement to be more specific than the info i see on their web site. maybe the packaging is more clear.

fwiw, according to research docs get between 2 and 70 hrs of contact nutrition ed (average 23) as part of their training. i've regularly found myself in the position of teaching my own doctors. when i first started testing d3, the lab was testing the wrong metabolite. i flagged it to my doc, who said no that's fine, that's the active metabolite. then she double checked with my naturopath (in the same plaza) who backed her up. so then i had to go teach the naturopath (who verified what i was saying via checking a powerpoint presentation she had on file, which had been given by the author of the related research papers i had read) and finally, i did get the proper test. that was over 10 yrs ago. nobody would screw that up now. but basically, when a doc says nutrition has nothing to do with it, that's 'to their knowledge' and nothing more.

mag and a healthy diet in general will help with the mental stuff. check this out
mental-spiritual-health-f19/topic29540.html

re OCD https://link.springer.com/article/10.10 ... 012-9371-3
re mag and adhd https://bit.ly/2Izw38f
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sun May 13, 2018 7:28 am

Ok. The Vitamin D is 23.4 ng/ml

The label on the magnesium says it’s magnesium oxide. But it also contains soy. Which I am not supposed to have not the SCD diet so I will get the magnesium supplement you suggested.

I have 5000iu vitamin D3 capsules. Do you think I should hold off on these until I get my magnesium checked?

Are there others minerals or vitamins I should get checked ? Perhaps there is a standard test to request that checks all of the key items?
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sun May 13, 2018 10:03 am

magnesium oxide is a decent laxative. absorption is not great however. i'm thinking right now of one member here on the forum who fairly recently complained of symptoms related to mag deficit while using i believe it was mag citrate daily, then switched to mag glycinate and presto, problem solved. your wife may also want to consider making the switch.

it couldn't hurt to stay off supplements in the week before any testing. if you're able to act fast, may as well avoid d3 for the time being.

beyond b12 and more recently d3, health care pros are not in the habit of testing for other nutrients. the list of things to test is supported in the literature, but hasn't translated into mainstream practice.

if docs are receptive to your request for additional testing, beyond serum magnesium it would not hurt to know serum zinc and serum copper. serum uric acid is nice to know but not need to know. you may already have serum calcium and serum ferritin on file, doesn't hurt to know those. there are other tests you can get into (other b vitamins for example), but serum magnesium, zinc and copper would be a really good start. they will all likely come back 'normal', but it will be like making sure d3 is at 50 or b12 at least 500 - you're looking for parts of these normal ranges that exclude the average ms patient levels.

once you have results, in addition to magnesium it would be wise to invest in a quality 3-a-day type multivitamin/multimineral for at least as long as you're on a d3 regimen. when you begin, timing is important. make sure you take magnesium twice a day - once with the d3, and once a few hours away from any d3. to this day i still find if i only take mag with d3 for a few days, and none on its own, the mag deficit symptoms creep in.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Please help me cope with my symptoms

Postby ElliotB » Sun May 13, 2018 1:28 pm

Stress is harmful in many ways. You either need to control it or it will control you and ultimately harm you in many ways as you are already starting to experience. And if you do not eliminate it, you may never improve and there is likely more bad stuff to come.

There may not be a magic pill that will cure you of all your negative health issues. At some time, you may have to make some very difficult choices between lifestyle and health. You can have good health and a good lifestyle but it may be different than what you are used to/have now.
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Sun May 13, 2018 3:30 pm

Elliot,
I am definitely prepared to make lifestyle changes. I am willing to do virtually anything if it will work. I have already drastically changed my diet to deal with the crohns with no meds. I just need to know what to do. First I will start eating more foods with magnesium. Also starting exercise again. I am still drinking wine which is allowed on my crohns diet. Is there a short list of key lifestyle changes I should be making?

I will focus on relaxation techniques. Hopefully the family will get better. Doing therapy with my son. I guess the biggest thing will be to stop worrying. That is my biggest stressor. Any tips are appreciated. Thanks
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Re: Please help me cope with my symptoms

Postby jimmylegs » Sun May 13, 2018 8:31 pm

i grew up with gnawing anxiety in the pit of my stomach at all times. later, when my high vit d3 intake caused the worst symptoms my throat was a mess, i was choking on everything, throat would seize, couldn't draw deep breaths, i thought i was going to die. when i fixed the magnesium dose and timing in relation to d3, my throat improved in days. i was sold. over the ensuing weeks, months and years i noticed a bunch of interesting other benefits. these included the permanent disappearance of my status quo anxiety level. it's really nice to actually have the capacity to feel relaxed.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Please help me cope with my symptoms

Postby Lostpuppy » Mon May 14, 2018 1:31 am

Very interesting Jimmy. I’m going to call tomorrow for blood tests. I already had some anxiety issues prior to crohns. When the crohns diagnosis came it did make sense although I never really had diarrhea. The pain made sense. ( I had hernia surgery in the spots where my crohns pain was). When I looked at my crohns medication options it was scary. Almost all of the drugs can cause cancer and bad side effects. I decided to go to a prestigious hospital with a doc that had lots of experience who confirmed my issue and told me how bad it could get and I needed a biologic medicine which was the only thing that would give mucosal healing. He told me about the cancer risks but never about the MS risks. Anyway I have now read too much on the internet about the issue and the ms doc puts as a big unknown, i now feel like I’m getting different symptoms which I believe I am truly feeling. I am experienced and know that my body could cause me to think I have symptoms. But mine start to go away and then come back but now they are coming back a little different than before. So in my mind it sort of feels like it’s getting worse. Anyway that’s some background on my anxiety. Thanks for the tips. I’m sort of hoping the blood test will show something is off. I’m glad you were able to figure out that the magnesium helped you.
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