Which way to go?

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Which way to go?

Postby celticchristian » Fri Aug 24, 2012 3:51 pm

Hello,

I'm 20 years old. For the past 5 or 6 years I've had problems with my hands and feet stinging when grabbing or stepping on things a certain way. Feels like I'm grabbing and stepping on needles sometimes. I've researched this issue for years, and yes, MS was part of that research, but not a lot of thought was put into it. I've been to the chiropractor a few times (I have minor scoliosis... 11 degree curvature last time I checked), but I've never been able to figure out why my hands and feet do like that. So I've just dealt with it and not really put a lot of thought towards it for the past few years. For 3 years I did construction work and roofing, and I was constantly having problems with my back and feet. I managed to get a better job in the past half of a year; I've started building cabinets, which is much easier on my body. It's still work, but it's much less strenuous.

About a week ago both my legs and feet just went numb. Not completely; I can still walk and feel things; that stinging pain has increased quite a bit. I would say that most of the day their half-numb with a few short times during the day that they don't bother me as much. Sometimes it gets so bad I have to find somewhere to sit or something to lean on. They don't really hurt that much, their just plain numb. It's still not improving and it's been a week. I just have no strength left. Even my arms feel weak (but not numb). Things I use to be able to lift I have trouble with now. I'm not sick, and I'm healthy as a horse except this issue.

This past week I've been looking up different things and MS has been on that list. 2 weeks ago this was the furthest thing on my mind, but now I'm getting a little worried. I'm a 20 years old, healthy young man. I drink mostly water and Gatorade, eat salads, tuna salads and yogurt about every day. I get plenty of exercise at work. The only time I really sit down much is after work until I go to bed, for only a few hours. After supper I even go on walks with my mom about every day. We use to walk about 30 to 45 minutes, before we'd leave. Not because we were tired, but just because we wanted to stop. This past week I can hardly make it for more than 15 minutes. It's so frustrating how much I've gone down in just a week! And it's not letting up.

I DO NOT have a MS diagnosis or even a possible MS diagnosis. I've not even seen a doctor yet and I don't know if I should or not because I don't have health insurance.

If it is MS, what is the best route to go? What's more conclusive, an MRI or a spinal tap? And which is cheaper typically? If it is MS I'd like to know, but I don't want to drain my savings. And to be honest, once I know, I don't see how there's anything I could do because medication costs a lot, I hear.

I hope someone can talk me in the right direction, because I don't know what to do. I guess I should start at square 1, but I don't know if I should go to a regular doctor or skip directly to a neurologist? But that'll cost $300 just for a consultation!

Thanks

~
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Re: Which way to go?

Postby lyndacarol » Sat Aug 25, 2012 8:37 am

I take the liberty to repost this suggestion from NHE:
Welcome to ThisIsMS. While your symptoms could potentially be due to MS, they could also be due to other, more treatable problems. One thing you could do is to document all of your symptoms and then take that to a doctor. With respect to finances, your county may have a health clinic that offers a sliding fee scale such that you could see a doctor at a very low cost. My county offers this and a doctors visit is just $20 while being seen by a nurse is just $5. There are also discounts for blood tests and prescriptions as well. In addition, there may be other groups that offer funding for low income patients should you need to be referred to a specialist.

NHE


Welcome to ThisIsMS, celticchristian. I offer you my standard action plan recommendation:

First, you may not have MS at all; it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose My first three MRIs, EMG, and evoked response tests were normal, and it was the fourth neurologist I saw before I got my MS diagnosis. I have NEVER had a lumbar puncture (a.k.a. spinal tap). Before these expensive tests even existed, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while. IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I do not think that a specialist, a neurologist, is necessary right at the beginning of your investigation. I suggest that you find a GP or internist, with whom you are comfortable, who is compassionate and who enjoys being a "disease detective." A GP can order the tests necessary to rule out some possibilities. NHE had a very good suggestion for a new member earlier this week about a county health clinic; in my area there are free clinics for those without insurance or who cannot afford to pay. If you are financially able (testing IS expensive – ASK the hospital or lab for the price of the test BEFORE you agree to it!), start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests – of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests, at about $50, I think), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). These tests are not all taken it once; your doctor would order them as he worked through the list of likely causes for your symptoms. Ask for a copy of all your test results for your own file. Since I suspect insulin involvement and insulin resistance in skeletal muscles, this could play into your muscle weakness.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar – I think Gatorade has a lot of sugar too), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), remove 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. My suspicion is that Fatty Liver Disease is also involved, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).


We are here to listen…
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Re: Which way to go?

Postby celticchristian » Mon Aug 27, 2012 6:57 pm

I appreciate your help on the subject. It's given me a lot to look for and think about. I'm going to the doctor soon and am planning on having some of those tests done. Before then I'm going to go to the chiropractor. My hope is that maybe this is a spinal problem that an adjustment might could eliminate. If that doesn't doesn't help, then I'll go to the GP.

My symptoms do worsen quite a bit while in/and after taking a hot shower. Don't know if that's really any help in the diagnosis, or if maybe there's a better explanation for that as well.

I’ve not checked my blood sugar levels (probably need to have that done), but I’m 20, slender, and in terms of my Gatorade intake, it’s usually only one a day, and I sweat enough at work that I don't think insulin levels would be a problem in my particular case. I may be wrong though.

I appreciate everything you've said, you've given me plenty to look into, and I'll ask about those tests when I go to the doctor. Maybe it's a smaller issue.

Today was my worst day so far. It's gotten to the point where I cannot stand up in one place without leaning against something. I know people are always feeling a little weak and then crying "MS!", and I have been there myself in the past (maybe not with MS but with other things I was worried about), but I have never in my life been faced with this. This isn't just a little weakness or feeling sore, or whatever else people usually complain about. I'm 20 years old and for the first time in my life, I considered buying a cane today. I didn't though, I'm going to just wait this out a little longer and hope tomorrow's better. I'm hoping to get an appointment later this week or maybe early next week. It's as if my legs have gone on strike and I'm sick of it!

Anyway, thanks!
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Re: Which way to go?

Postby jimmylegs » Tue Aug 28, 2012 5:20 am

hi and welcome :) you might want to take a long hard look at nutrition given that your diet sounds a little limited and your activity level sounds moderate to high. you might be interested in the first post of my 'regimen' link. my approach is basically whole food focus - with attention to nutrient density, inflammation factors, fatty acid balance, and limits on gluten and phytates (and any other known zinc-depleters), bloodwork so that you know if your nutrient status matches an ms patient or a healthy control, and supplements to make up any problems not addressed by diet (including hydration). hope you feel better soon :)
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Which way to go?

Postby lyndacarol » Wed Aug 29, 2012 1:09 pm

Check for "new messages;" I sent you a private message.
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Re: Which way to go?

Postby celticchristian » Sat Sep 22, 2012 2:53 pm

Hey, in relation to my diet, I only mentioned my lunch time diet. For supper I have home-cooked meals that range in a variety of things. Vegetables, fruit, bread, some meat (not a lot, usually). And not a lot of sweets.

Anyway, I've been to the chiropractor 4 times (and plan to continue for a while), and it seemed to be helping a little for a few days but then the numbness came back. Since then I've had occasional numbness in my arms and even the right side of my head. My numbness started August 17, and now it's September 22. I went to the doctor several days ago and they did a few blood tests. They ruled out B-12 deficiency, most environmental and dietary causes, all my levels are fine. They tested my liver and kidneys and their fine. They tested several other things but I can't remember now everything they did. I'm going to get a copy of the results for my own curiosity. They ruled out lupus and a whole slew of other autoimmune diseases. She's wants to send me over to a neurologist now, but she also brought up the possibility that it might be stress related. My father is STUCK on that, and it's so annoying, because the only stress I'm dealing with is my current health issue! I've had lots of stress in the past, yes, but the way I handle stress is something will bother me immensely for a short while then I'll just forget about it and move on; I don't hold on to stress.

I'm refusing to go on any stress related/depression medication, I am not interested in this "deadly cycle" of most specialized medication: pills causing side effects, then getting pills for the side effects, and so on. I know too many people that pop 10 or more pills and day and I am not interested in that. Even if I am diagnosed with MS I'm not really interested in daily medication. What is confusing is why my doctor has not even mentioned or brought up MS. She's dealt with lyme disease, lupus, stress, vit. deficiencies, etc, but hasn't said one word about MS, and I haven't said anything to her either about my thinking it may be that.

Anyway, I'm going to a neurologist here soon, so I'll see what I find out.
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Re: Which way to go?

Postby itzmesarahb » Sat Sep 22, 2012 3:10 pm

As far as stress-related goes, my doctor told me when the only symptom I was experiencing was tingling and numbness could be stress-related due to my Generalized Anxiety Disorder, Panic Disorder, and Post-Traumatic Stress Disorder. I got a blood test and an MRI to rule out other possible causes but given my family history and my general well-being (besides anxiety) he doubted it was anything else. I guess you can get tingling and numbness due to hyperventilation but I wish you luck at the neurologist. I hope you get any issues you may have addressed.
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Re: Which way to go?

Postby celticchristian » Sun Oct 07, 2012 5:55 pm

Well I went to the neurologist last week and he suggested testing for MS. Today was the worst day so far. Me and mom had been going on walks since this started and I had been walking maybe 10 minutes or so before I had to stop. Today I made it less than a minute before I had to turn around and go back to the car. I'm scared because I don't know how much worse it'll get. My whole body feels shaky and weak. My legs are so weak I can hardly stand for any length of time at all. Guess it could be worse. I've seen some videos on you tube where people just couldn't walk anymore, at least mine's not that bad.

I've got someone to talk to about it, he's got Charcot Marie Tooth disorder, which is somewhat similar to MS, so I'm not totally alone I guess.
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Re: Which way to go?

Postby celticchristian » Sat Oct 27, 2012 12:48 pm

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Last edited by celticchristian on Sat Jan 19, 2013 4:37 pm, edited 2 times in total.
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Re: Which way to go?

Postby lyndacarol » Sat Oct 27, 2012 4:15 pm

Hi Jacob,

I am not qualified to interpret your MRIs, but I can have an opinion: lesions are not definitive of MS. Many people without MS symptoms have lesions that are discovered upon autopsy; many people with MANY MS symptoms have NO lesions seen when MRIs are performed. White spots (lesions) can appear for many reasons other than MS. I am not yet convinced that these lesions have anything at all ever to do with MS. I am not convinced that MS is a purely neurological disease; I suspect it is more a problem of endocrinology.
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: Which way to go?

Postby dez2000 » Mon Nov 12, 2012 12:58 pm

celticchristian I am 81 years and what a doctor told me 50 years ago, after though Physical, 'disgustingly healthy’. If you want to be healthy, do it yourself, be your own doctor. Apparently you have access to the Internet. Knowledge is power. For me it is the internet, the most powerful tool ever developed. All the knowledge for health is there. The key words are diet, vitamin C, vitamins, minerals and supplements. To start down the road to health, start with: 'sugar the sweetest poison of all’.
My goto site is; ‘doctoryourself.com’. If you thoroughly investigate this site, you may never be of ill health for the rest of your life, except for physical injuries. Only you can attain a healthy life. Is it worth it? For me it has been and is.
The study of Dr F R Klenner’s life, as doctor in Reidsville NC is a classic example of a daring pioneer in medicine who chose to cure, not just treat his patients. Let him become your doctor. The Klenner Protocol is his cure for MS. …dez...
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