Diagnosed with MS 1 year ago need help and advice!

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Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 12:25 am

First of all let me say that I am extremely grateful for any advice or help concerning this matter. It all started about 3 years ago when I started having really bad pain in my back. I am 21 now. I am an avid tennis player and played about 5 hours a day every day. Naturally I thought it was a sports related injury. My mom took me to the doctor, and he said it was probably just a bad sprain and gave me some Flexeril and Vicodin. So I stayed off my feet for about 6 days, and to no avail my back was still hurting. It started to progressively get worse. Eventually I was in so much pain my mom agreed to take me to a specialist. The specialist diagnosed me with Fibromyalgia and prescribed me Tramadol, Valium, and Amitriptyline. I used the medicine for about 2 years never finding any real relief, but I thought it was just something I'd have to deal with. At that time I moved to Maine with my significant other. That's when the attacks really started. Horrible pain in my back, neck, and legs. This is when I established care with a doctor who is still my doctor today. I made my first appointment and came into the office sluggishly. I was really pale and in total agony by the time I got into the exam room. I told I was having what I thought to be a bad fibro flare up. She examined me for a few minutes, and told me my muscles were spasming worse than she'd ever seen and that they felt like rods. She sent me for bloodwork an mri and a cat scan. She said she didn't think it was Fibro at all and obviously my previous doctors didn't take the time to realize it. I was prescribed Percocet 5mg and Soma and got a morphine shot that she ordered at the hospital when I went to get my tests. The medicine helped immensely, and I finally knew what real relief felt like. About 2 days later I got a call from my doctor saying I had Multiple Sclerosis. Naturally, having no clue about it, I asked her how long it would take to go away. She said it was unfortunately uncureable and that I would live with it for the rest of my life. I was really genuinely afraid when she began to explain things. Fast forward to today. I am now 21 and trying to take things one day at a time. I have good days and really bad days and am trying to keep ahead of the pain. The problem is I feel the pain is getting ahead of me and I'm getting really depressed. The medicine is starting to not work as well, and I'm scared to ask for a dosage increase because I'm already on a strong dose. The medicines I am taking now are Oxycodone IR 15 MG 3x a day Hydrocodone 10MG as needed for breakthrough pain Soma 300MG 3x a day a 4th if needed and Ativan 1MG at bedtime. Thanks in advance for any help. I'm tired of the pain!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby ssmme » Thu Nov 03, 2011 7:15 am

I don't have an answer for you. The narcotics do help short term but after a while you need more to get the same effect hence the reason why people get addicted to them. Maybe look into holistic approaches to pain management like meditation. I don't suffer pain with my "version" of MS but have progressed to almost constant tingles in my hands and it drives me nuts. I'm tired of popping pills for every tingle, spasm, fatigue, sleepless night, etc. Meditation helps me to ignore the sensation. I wish there was a real solution for you but MS is a disease of suffering for a lot of us. I'm sorry once again for not having the magic bullet for you.
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 8:41 am

I appreciate you taking the time to respond! And there is actually a holistic doctor and practice right in the next town. My doctor has suggested medical marijuana, and I'm seriously considering trying it. I'm definitely going to try the meditation too! Thanks again!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 1:27 pm

I would really like to hear about everybody else's experience with MS such as daily life and medications that they find relief with. My biggest issues right now are the constant fatigue and aching pain. Gonna go to the doctor next week to see about medication adjustment.
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby jimmylegs » Thu Nov 03, 2011 2:45 pm

hi there, sorry to hear your painful story :(

here's my 2cents - and yes i am being facetious when i say that physical exertion does not deplete your body's natural levels (yeah right hehe) of Flexeril, Vicodin, Tramadol, Valium, Amitriptyline, Oxycodone, Hydrocodone, or Soma.

physical exertion *does* however deplete your levels of magnesium. magnesium is easily lost via sweating. magnesium is directly related to a muscle's ability to relax.

remember the other month, when nadal collapsed during that interview? right away i thought yep, that guy needs magnesium... maybe i should send him an email.

you may want to think about requesting a serum and/or RBC magnesium test.

the normal range for serum magnesium is 0.70-1.10 mmol/L, however, research suggests the 0.90 should be the actual minimum.

there are all kinds of nutrient level problems in ms patients. as an athlete, you are more susceptible to nutrient depletion than your average joe. i can tell you all about the different nutrition problems you might want to investigate, but the number one go-to for you to try in order to calm the tension and pain and fatigue would be magnesium.

if you do not want to bother with testing, here is an easy option: pick up some *magnesium glycinate* and take a pill before a meal, 3x per day for a week, then check back in and let us know how you feel!

fyi this is the magnesium glycinate product i currently use http://kirkmanlabs.com/ProductKirkman/1 ... ergenic/#g
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 3:43 pm

Hey Jimmy! Thanks a lot for that bit of advice! I am going to pick some up today and will check back and let you know of any progress! Its been so hard for me to play tennis lately because of the pain! Hope you are well!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby lyndacarol » Thu Nov 03, 2011 4:21 pm

Welcome to our community, MSSufferer.

You seem to have found a good doctor, her comment that MS is "uncureable" may be accurate TODAY, but I do not agree that you will "live with it for the rest of your life." Many people have found dramatic improvements with diet. One of the latest is the story on Dr. Terry Wahls (http://www.TerryWahls.org).

Do you keep a journal of what you eat each day? Maybe you could discover a correlation between good days/bad days and the food you eat. For example, most diets severely restrict sugar and artificial sweeteners; I suspect sugar has a strong involvement in MS.

You have found a group of friends here who understand many of the same things you have gone through. Ask your questions, we will try to help. Keep your eyes and ears open; please share what you find with us; each of us holds different opinions, but we basically stick together – MS is the glue.
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby jimmylegs » Thu Nov 03, 2011 4:21 pm

no probs! just make sure the magnesium is the glycinate form. some of the other forms are very insoluble, and will give you the runs with insufficient absorption to be of real benefit. and thank you, i am well! feel better soon :)
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 4:33 pm

Lynda I will send you a private message
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby jimmylegs » Thu Nov 03, 2011 4:38 pm

i would be interested in the food angle too by the way :) diet is the foundation of it all and my in-person friends and clients always get asked for diet diaries! now does everyone provide perfectly accurate ones, possibly not, but at least you can get a sort of starting point to look for nutrient gaps, anti-nutrients, inflammatory action, and food combinations that work against absorption.
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Thu Nov 03, 2011 5:38 pm

So what kind of diet should I be looking at? High Fiber, Protein, carbs, high calorie intake? My diet is pretty poor right now and I'm a total soda junky. Could that be contributing to the pain? I do consume a lot of sugar as it is, but probably the wrong kinds. I love chocolate and soda.
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby jimmylegs » Thu Nov 03, 2011 5:54 pm

yikes! yes diet can certainly be a contributor

can the soda ASAP. oh sheesh no pun intended!!! anyway, too many phosphates in soda. you can keep the chocolate in small amounts (dark preferred over milk).

some intro info on magnesium only

info on retaining dietary magnesium
http://www.ehow.com/how_3954_absorb-mag ... ments.html

magnesium foods
http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

if you have a read through my 'signature' links there is a lot more detail on food. i don't agree with some of the restrictions advised by best bet or wahls regimens, but there are some really good points to both also.

for diet you can work on building up the amount of unprocessed whole foods, lots of deeply coloured vegetables, some fruit, fish, chicken, lean red meat no less than once a week. go easy on the gluten grains. some will say avoid eggs and dairy, but i'm not in that camp, rather in the limit intake category. i like cream in my coffee and milk in my tea, but i don't drink milk by the glass, or eat breakfast cereal with milk either. i watch the amount of cheese that i eat (except for yesterday i had a little cheese and crackers binge, but it was an afternoon social not the usual thing for me!)

one of my most nutritious anti-ms, anti-inflammatory dinners is so simple, but i polish my halo every time i eat it: baked sweet potato, boiled swiss chard with vinegar and butter, and a filet of wild salmon. mmmmm!

anyway like i said, lots of food info in the links below (eg there is a whole set of food restrictions on the direct-ms site - a little too restrictive and a little too crutch-y for my taste, but lots of people try this one or something similar)

happy reading!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby MSSufferer1990 » Sat Nov 05, 2011 4:58 pm

Just wanted to update everyone on how I'm doing. I have been taking the Magnesium and have essentially cut out all sugar in my diet except for occasional dark sugar. I have also cut the soda out. I am happy to say that the pain is improving and I'm actually sleeping quite a bit better! I'm even finding myself taking less pain medicine! Thanks for the help guys!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby lyndacarol » Sat Nov 05, 2011 5:37 pm

Congratulations, MSSufferer! So glad you updated us, too – we share the joy in your improvement.

I think you began in the right place by reducing almost all sugar and cutting out soda. I know it is not easy to change your diet so dramatically, but if you experience less pain, maybe it will be easier to stick to your new routine.

As jimmylegs suggested, foods rich in magnesium/magnesium supplements are a good idea since it is so important for the muscles. The body can also absorb magnesium through the skin from soaking in a warm bath, in which Epsom salts (magnesium sulfate) have been dissolved. (The warm bath water alone should help relax the muscles.)

So glad you are sleeping better – a good night's sleep is bound to help with almost every problem. Please keep us informed as to how you are doing; we are friends who care. Next, your goal will be to add all the good diet things that jimmylegs recommends!
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Re: Diagnosed with MS 1 year ago need help and advice!

Postby jimmylegs » Sun Nov 06, 2011 6:20 am

awesome news! hope you're playing lots of tennis again soon :D :D :D

like LC says, an epsom salts bath is another option BUT do it according to package directions - if you overdo it you can end up feeling like a soggy noodle! :S

thanks for the update! keep up the good work!
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