Not sure where else to go

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Not sure where else to go

Postby grumpka » Fri Jun 15, 2012 4:51 am

Hello everyone,

I just found this forum this AM. A quick background on me, I'm a father of six children, and husband to a great wife, married 20 years this July :-D . About a year and a half ago, was diagnosed with TM. Mild case, as I lost no major function, but had the typical numbness from lower rip cage down, and muscle weakness etc.. Almost full recover, except for the permanently damage nerves that must be causing my right leg to have that "Frost bite" numbing, burning tingling, restless leg thing going on. Also, have very annoying pulling/like a ball under my rip cage (lower ribs, left side), that makes life so much fun.

Shortly after the initial confirmation of TM via spine MRI, doctor did a brain MRI. The results stated "consistent with early stage MS". I and my typical stubbornness , refused the answers. I went for a second opinion. The second doc looked at MRI and said he saw nothing on the scan, and thought the other guys must be crazy. Well, turns out, the second opinion doc might not have gone through all the images, and just wanted me to feel better about myself, LOL. Don't know. Anyway, I took this great news, at that time, and went on with life assuming that I do not have MS. That was good enough for me. Except now....

Having no insurance, I'm kind of on my own. Even if it turns out I have MS, I can't do a thing about it. The reason I reached out here, was the little research I'm doing, keeps pointing me back to MS. MS hug, seems to fit the bill for the weird pull/ball under rib cage thing. The leg symptoms get really bad sometimes at night, I can't even sleep, and sometimes the depression, over-tired, beats me down. It's like you get these days where nothing makes you happy, and nothing matters. You just feel hopeless. I've had a strange twitch/tremor in my left thumb and finger, started yesterday and has been off and on since. Get's pretty consistent at times. I've had this twitching in my right arm/hand, legs, and even other odd places. Wife just says "vitamin deficiency". Well, that would be odd, as I take multi-vit everyday, along with fish oil, b12. Overall health was improving, even lost weight. I think that despite my efforts, I'm still feeling hopeless some days. I was just starting to feel more positive about life, and than the crazy little crap starts to act up again. Now, I just don't know what is next. Maybe, it isn't MS, and I'm just putting dots together that have nothing to do with MS or TM.

Long and short, why I am here, I have no health insurance. Do I really need to worry about MS? If the first doc was right, and I do have MS, not just TM, wouldn't it be much worse? I'm inclined to just ignore it all, and try to rise above these little troubles. However, being father of six, I have an obligation to assure that I can provide for them until they are all adults and on there own. To do that, I have to make sure MS doesn't get ahead of me, if that is what is really going. How do I even start with no money, no insurance, and a full plate?

I know, no one has the answers, but I thought sharing this here was a start. My family really isn't a support system, as they seem to think it is just me complaining ( I tend to share these little pains to my wife, who is most likely sick of hearing it). I don't think they are mean, or don't love me, but they have no clue, as this isn't something they can see or relate to. Plus, everyone has their own full plate to deal with. That pretty much leaves me to learn to suck it up and learn to ignore all this mess.

Sorry for the book long intro. Just a lot to get off my chest....

Thanks to anyone reading this. :smile:
~GRUMPKA~
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Re: Not sure where else to go

Postby FLJhawk » Fri Jun 15, 2012 5:45 am

If there is a chance of MS, do what you can by getting started on a good MS diet and start taking the MS supplements, i.e. Vit D3, Zinc, Magnesium, Malic Acid, Vit E, etc etc. Also, try to get on LDN (discussed extensively), which is cheap if you can get a doc to prescribe it. So, there are things you can do.

You might also want to show you family this site and have them read posts from people with MS, and how difficult it can be. We may look healthy, and we may do well at times, but at other times we are exhausted and, yes, scared about what is happening to our bodies.

Good luck!
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Re: Not sure where else to go

Postby lyndacarol » Fri Jun 15, 2012 5:48 pm

Welcome to ThisIsMS, grumpka; you have found a group of supportive friends here.

As the member who believes that excess insulin is involved in the symptoms of MS, I encourage you to request your physician order a "fasting blood insulin test." This insulin test is one of the least expensive blood tests, it has been available only since 1960; the test must be done VERY soon after the blood is drawn (or the sample must be frozen if the test cannot be done right away) because insulin breaks down quickly. Ideal test results are 3 UU/ML or lower. The insulin hormone is quite caustic; it damages the inside of blood vessels and I believe this is the source for the raw, "shivery" feeling that I have in my legs – I suspect it could be responsible for the "frostbite" numbness, burning, tingling leg problems that you have. Excess insulin leads to insulin resistance in the smooth and skeletal muscles – perhaps connected to tremors and twitching and muscle weakness.

I encourage you to keep a diary of the foods you normally eat with notes recording your symptoms. Perhaps you might notice a connection between sugary, sweet foods and your symptoms.

Then, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Any change? Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS.

All the best to you.
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"
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Re: Not sure where else to go

Postby want2bike » Fri Jun 15, 2012 7:12 pm

Food is the most important thing you can look at in treating any disease. Drugs are not the answer. Check out the diet section on this site and get on a healthy diet designed to treat MS.

http://articles.mercola.com/sites/artic ... nking.aspx

http://www.franksherwood.com/tnms.htm

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: Not sure where else to go

Postby grumpka » Sat Jun 16, 2012 11:52 am

FLJHawk: Thank you for the advice. I will look into the supplements you mentioned. I don't want to feel like I need pity or sympathy, so I avoid making a big deal of anything. Aside from the fact, there are others with far worse to deal with. I guess I wish my family understood as to "why" I can be depressed, grumpy, tired, and just miserable sometimes. I'm only human and can't always control how I feel, or the physical symptoms that come up time to time. For the time being, I'm the one who needs to learn to deal with this stuff better. Some days are just better than others. Anyway, thanks for the info.

lyndacarol: Thanks for the welcome. I've never heard of the insulin thing. I just asked about blood sugars related to an eye issue. They said sugars have always been fine. However, what you are speaking of is a bit different from the standard testing. Interesting, and very much appreciated that you mentioned this. I will further research. I wonder about the twitching/tremor thing, as it is so bizarre to have it one day, and be fine the next, weeks later, comes back. Again, one of those reasons I am starting to think the first doc with MS diag. was on the ball. I can't read MRI's so, I have to take their word on it. I don't eat healthy! I am a chocolate NUT and seek out anything with chocolate in it. I try to eat sugar free or no sugar added things like fudge pops and such, but still can't stay away from it. I really do need to look into a better diet, and one that will prepare me for what might be ahead/already here. Even without the MS diag, I have TM, and it isn't something that will just go away. The damage was done, and know this as every time I get sick, a lot of the symptoms crop up again. The list of "odd" symptoms just start to come together. Thanks for the info.

want2bike: I agree, and seems like a very large segment of folks with MS say the same. Diet is important. I'll check out the links. Thanks for the info.

Best to all, and thanks for having me here. Finally have a place to let off some steam and not feel too guilty for sharing.
~GRUMPKA~
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Re: Not sure where else to go

Postby jimmylegs » Sun Jun 17, 2012 3:50 am

hi grumpka, i second the idea of optimizing diet. certain cravings are actually linked to nutrient deficiency. one well known example is pica, a condition linked to poor iron status. magnesium is another nutrient associated with cravings, and also linked to multiple sclerosis in research.

http://www.diabetesinfocenter.org/Print ... icleID=819
"Five minerals (and their co-factors) are critical for adequate blood sugar control: chromium, magnesium, manganese, zinc, and vanadium. ...
Magnesium is part of over three hundred enzymes in the body but also helps maintain tissue sensitivity to insulin, helps control glucose metabolism, and participates in the regulation of insulin.(1)
Interestingly, clinicians often note that magnesium deficiency leads to sugar cravings and chocolate cravings that disappear as soon as magnesium levels are brought back to normal. Because large amounts of magnesium are found in the hippocampus (the "emotional, thought and memory center of the brain"), (2) deficiencies may form the emotional environment which encourages carbohydrate cravings.
A number of both animal and rat trials have shown that stress triggers chocolate cravings"

interestingly, stress causes your magnesium excretion to increase, and there's actually a decent amount of magnesium in chocolate. too bad about the sugar part! healthier food sources of magnesium: http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

for more info you might be interested in reading my 'signature' links below.
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Re: Not sure where else to go

Postby grumpka » Sun Jun 17, 2012 6:36 am

Hey Jimmylegs,

That actually put a smile on my face. Funny to think that my recent chocolate craze actually is something being triggered by my body, not just my stomach, LOL. I lost around 20lbs in the last six months, so I attribute the chocolate craving to a coping device. However, it does seem to go beyond "normal" cravings. I eat just about anything with chocolate. I tried switching to dark chocolate actually, as I know that is good for keeping blood pressure down and other good factors from it. I was actually proud, as I have lost enough weight, and switched my diet enough to ditch one of my blood pressure meds. Hoping I can kick up my efforts another notch and make sure I stay off the second BP med. A healthier diet would be good all the way around I'm sure.

My biggest fight right now seems to be depression. The symptom come and go, but the overall mental effect of all this is starting to pile up I think. This has somewhat caught me off guard though. I kind of always thought depression a bit of a joke, as everyone gets down in the dumps. Doctors usually just want to put you on drugs to "make us happy". The magic happy pill. I've had to take xanax from time to time for panic attacks, and have a love hate for drugs being a solution. I've worked very hard to not take any meds, unless their is no other option. Now, fighting what seems to be a new low in my life, I'm on for yet another battle. I've got to hope a major change in diet will bring about a better life. I can see all this TM/MS crap snowballs your life into a complete out of control mess if you let it.

Well, off to grab my chocolate fix and do some reading, LOL.

Thanks for the help

:)
~GRUMPKA~
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Re: Not sure where else to go

Postby jimmylegs » Sun Jun 17, 2012 9:00 am

glad to get you smiling :) here's a little more info for ya!

Rapid recovery from major depression using magnesium treatment
http://www.medical-hypotheses.com/artic ... 4/abstract
"Major depression is a mood disorder characterized by a sense of inadequacy, despondency, decreased activity, pessimism, anhedonia and sadness where these symptoms severely disrupt and adversely affect the person’s life, sometimes to such an extent that suicide is attempted or results. Antidepressant drugs are not always effective and some have been accused of causing an increased number of suicides particularly in young people. Magnesium deficiency is well known to produce neuropathologies. Only 16% of the magnesium found in whole wheat remains in refined flour, and magnesium has been removed from most drinking water supplies, setting a stage for human magnesium deficiency. Magnesium ions regulate calcium ion flow in neuronal calcium channels, helping to regulate neuronal nitric oxide production. In magnesium deficiency, neuronal requirements for magnesium may not be met, causing neuronal damage which could manifest as depression. Magnesium treatment is hypothesized to be effective in treating major depression resulting from intraneuronal magnesium deficits. These magnesium ion neuronal deficits may be induced by stress hormones, excessive dietary calcium as well as dietary deficiencies of magnesium. Case histories are presented showing rapid recovery (less than 7 days) from major depression using 125–300mg of magnesium (as glycinate and taurinate) with each meal and at bedtime. Magnesium was found usually effective for treatment of depression in general use. Related and accompanying mental illnesses in these case histories including traumatic brain injury, headache, suicidal ideation, anxiety, irritability, insomnia, postpartum depression, cocaine, alcohol and tobacco abuse, hypersensitivity to calcium, short-term memory loss and IQ loss were also benefited. Dietary deficiencies of magnesium, coupled with excess calcium and stress may cause many cases of other related symptoms including agitation, anxiety, irritability, confusion, asthenia, sleeplessness, headache, delirium, hallucinations and hyperexcitability, with each of these having been previously documented. The possibility that magnesium deficiency is the cause of most major depression and related mental health problems including IQ loss and addiction is enormously important to public health and is recommended for immediate further study. Fortifying refined grain and drinking water with biologically available magnesium to pre-twentieth century levels is recommended."

that last bit is not going to happen, not at the city supply level at least, unless someone can come up with a form that is bioavailable but also won't scale up the waterworks. grumpka are you on city water or well water? does your kettle get much mineral buildup?
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Re: Not sure where else to go

Postby lyndacarol » Sun Jun 17, 2012 10:01 am

grumpka wrote:lyndacarol: Thanks for the welcome. I've never heard of the insulin thing. I just asked about blood sugars related to an eye issue. They said sugars have always been fine. However, what you are speaking of is a bit different from the standard testing. Interesting, and very much appreciated that you mentioned this. I will further research. I wonder about the twitching/tremor thing, as it is so bizarre to have it one day, and be fine the next, weeks later, comes back. Again, one of those reasons I am starting to think the first doc with MS diag. was on the ball. I can't read MRI's so, I have to take their word on it. I don't eat healthy! I am a chocolate NUT and seek out anything with chocolate in it. I try to eat sugar free or no sugar added things like fudge pops and such, but still can't stay away from it. I really do need to look into a better diet, and one that will prepare me for what might be ahead/already here. Even without the MS diag, I have TM, and it isn't something that will just go away. The damage was done, and know this as every time I get sick, a lot of the symptoms crop up again. The list of "odd" symptoms just start to come together. Thanks for the info.


Blood sugar levels can be "fine" because the insulin level is high to beat down the blood sugar. Blood sugar (glucose) can be either high or low in the presence of high insulin; these are two distinct substances – they are involved together in one common activity (getting fuel to the cells), but the level of one does not indicate the level of the other.

Chocolate is not necessarily a bad thing – the flavonoids it contains are good for you. But, please limit the sugar; choose the bittersweet variety. By the way, congratulations on the recent 20-pound weight loss. Insulin is also known as the "fat storage hormone" – human beings cannot put on weight without insulin. The fact that you carried extra weight would indicate to me that your insulin levels were/are high.

If you are interested in the diet angle, we have a Diet forum here. You might be especially interested in the story of Dr. Terry Wahls and her dramatic improvement in MS with diet: http://www.TerryWahls.com

So glad that you have joined us!
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Re: Not sure where else to go

Postby grumpka » Tue Jun 19, 2012 8:23 am

jimmylegs wrote:glad to get you smiling :) here's a little more info for ya!

Rapid recovery from major depression using magnesium treatment
http://www.medical-hypotheses.com/artic ... 4/abstract
"Major depression is a mood disorder characterized by a sense of inadequacy, despondency, decreased activity, pessimism, anhedonia and sadness where these symptoms severely disrupt and adversely affect the person’s life, sometimes to such an extent that suicide is attempted or results. Antidepressant drugs are not always effective and some have been accused of causing an increased number of suicides particularly in young people. Magnesium deficiency is well known to produce neuropathologies. Only 16% of the magnesium found in whole wheat remains in refined flour, and magnesium has been removed from most drinking water supplies, setting a stage for human magnesium deficiency. Magnesium ions regulate calcium ion flow in neuronal calcium channels, helping to regulate neuronal nitric oxide production. In magnesium deficiency, neuronal requirements for magnesium may not be met, causing neuronal damage which could manifest as depression. Magnesium treatment is hypothesized to be effective in treating major depression resulting from intraneuronal magnesium deficits. These magnesium ion neuronal deficits may be induced by stress hormones, excessive dietary calcium as well as dietary deficiencies of magnesium. Case histories are presented showing rapid recovery (less than 7 days) from major depression using 125–300mg of magnesium (as glycinate and taurinate) with each meal and at bedtime. Magnesium was found usually effective for treatment of depression in general use. Related and accompanying mental illnesses in these case histories including traumatic brain injury, headache, suicidal ideation, anxiety, irritability, insomnia, postpartum depression, cocaine, alcohol and tobacco abuse, hypersensitivity to calcium, short-term memory loss and IQ loss were also benefited. Dietary deficiencies of magnesium, coupled with excess calcium and stress may cause many cases of other related symptoms including agitation, anxiety, irritability, confusion, asthenia, sleeplessness, headache, delirium, hallucinations and hyperexcitability, with each of these having been previously documented. The possibility that magnesium deficiency is the cause of most major depression and related mental health problems including IQ loss and addiction is enormously important to public health and is recommended for immediate further study. Fortifying refined grain and drinking water with biologically available magnesium to pre-twentieth century levels is recommended."

that last bit is not going to happen, not at the city supply level at least, unless someone can come up with a form that is bioavailable but also won't scale up the waterworks. grumpka are you on city water or well water? does your kettle get much mineral buildup?


We are on Well Water. All levels normal/acceptable. Lot of white deposits after boiling water. (which is most likely normal). Judging from your detailed responses and my difficulty level of reading them, I'm guessing my IQ is bit lowered, LOL. Just kidding.

THanks for the info. Will comment more later. have to work...
~GRUMPKA~
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Re: Not sure where else to go

Postby jimmylegs » Tue Jun 19, 2012 4:52 pm

ok that's good, so *hopefully* that means the magnesium content in your drinking water is not down. a blood test will still be worthwhile as magnesium is easily lost in a wide variety of ways. sorry to be all science-y like that. i read like a maniac my first 8 mo.s post dx in order to be able to understand all that journal-ese.
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