I'm new to this.

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

I'm new to this.

Postby Chris23 » Tue Aug 21, 2012 8:27 pm

In 2010 I had back surgery due to a disc herniating into my sciatic nerve. It took almost a year for them to do the surgery because I didn't have insurance. After it was all said and done, I did keep my persistent leg pain. It burns almost all day everyday, and my right leg is significantly weaker then my left leg. For the past 2 years muscle spasms have been a major issue as well. I get massive knots on my back that seem to go from the middle of the right side of my back all the way into my shoulder blade. I can't hold my new born son for very long because I simply can't stand the pain. These spasms also last 90% of the day. Finally for the past few days I've been waking up with a VERY decreased sensation in my legs. It takes me at a minimum of 30 minutes a day when I wake up just to be able to have the strength to stand on them.

Ever since my injury my health has consistently went from bad to worse. I end up having to go to an ER a lot, and they don't think anythings wrong were I'm only 23. I have so many questions and concerns I've thought about MS quite a bit as a possible answer to what is wrong with me. Overall I guess I want to know if what I'm describing could be MS? I have researched a lot on how to get diagnosed, but with no insurance I can't get anything accomplished. I don't have any financial help, and I physically can't do most of the jobs available. Then I get people saying "oh your only 23 your young blah blah blah". So naturally everyone thinks laziness is my problem.

So please any advice, tips I just need something to help point me in the right direction. How do you get a doctor to understand something they've never been through? That is a very hard thing to do.
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Re: I'm new to this.

Postby NHE » Wed Aug 22, 2012 1:25 am

Hi Chris,
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.

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Re: I'm new to this.

Postby jimmylegs » Wed Aug 22, 2012 4:52 am

chris welcome to the forum. sorry to hear about the pain you're dealing with. i second the idea of writing down everything you're dealing with (concisely) so that the doc has a quick reference when you go in. personally, i can only really provide info on nutritional approaches - i'll send you what i sent my brother recently about spinal nutrition (he has a bulging disc too), and i'll also recommend magnesium for the spasms/knots. spinach and swiss chard are excellent healthy sources of dietary magnesium. a cup of either, boiled 3 min, provides about a third of your daily requirement. epsom salts baths are another option. the salts are magnesium sulfate. use according to package directions and that can provide some relief also. for supplemental forms, look for magnesium glycinate (or a similarly organic and soluble form - don't go for inorganic insolubles like magnesium oxide... that stuff just gives you the trots). i'll also link you up to another thread in which someone has been trying this approach for burning and twitching, with some success. hope you find this info useful.
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: I'm new to this.

Postby lyndacarol » Wed Aug 22, 2012 5:49 pm

I also welcome you to ThisIsMS, Chris23. 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. 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; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I suggest that you find a GP or internist, with whom you are comfortable, who is compassionate and who enjoys being a "disease detective." I am not sure that a specialist, a neurologist, is necessary right at the beginning of your investigation. A GP can order the tests necessary to rule out some possibilities. NHE had a very good suggestion about a county health clinic; in my area there are free clinics for those without insurance or who cannot afford to pay. 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), 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). 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 and spasms.

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 -- 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. 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).

By the way, I also had surgery for a herniated disc, but it did not improve my symptoms – mistakes are made even at the Mayo Clinic. They missed on my MS diagnosis; but MS is often VERY difficult to identify.

We are here to listen… to rantings, to questions, to everything.
All the best to you.
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