Hi! Currently in the loooong diagnosis process....ish...

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Hi! Currently in the loooong diagnosis process....ish...

Postby CL » Sun Jul 31, 2011 1:49 am


My name is chelsea. Im 22 years old and living in the northwest. I am currently in the PAINFULLY(all pun intended) slow process of trying to figure out whats going on with my body.
Hopefully this wont be too long...nor too boring/annoying. Just needed a place to talk to people who are or have gone through the same/similar process and get some advice and information.

Since early high school Ive suffered from chronic headaches and severe back problems. The headaches vary in severity and were/are for the most part easy to ignore.
The back problems have always been a bit more of an issue. The pain has always been in the thoracic and cervical spine areas (upper back and neck). For years I just thought it was just myofacial syndrome problem....severe chronic muscle knots. My back is always VERY tight and painful. Hurts to move my scapula (shoulder blades). Putting my chin to my chest causes severe shooting pain down my spine and is near impossible to do at this point.
The only other problem I experienced during high school was the falling. In the 4 years of high school I fell only 3...maybe 4...times. Sometimes I could attribute it to being a klutz but at least 2 of the falls were completely out of the blue. One specific time my legs just gave out from under me entirely. I was walking, took another step and the leg just gave. Ended up on the ground with scraped knees and hands and a twisted ankle. I didnt trip and it was even obvious to my mother who watched it happen.

To all of this I dismissed and ignored for years. During junior or senior year I had a two week span where I suffered from EXTREME fatigue. Had a hard time getting out of bed. Walking to the bathroom or down the stairs was a chore.
Went to the doctor....they thought it was my heart or lungs....sent me to a specialist. Nothing.

Well....Back in January/February of this year my back started getting MUCH worse. Im working full time nights at a hotel folding blankets and towels and I was preparing to go into a 6 month intensive course to be state certified to be a personal trainer. At this point I had been a gym rat for over a year and was working out regularly. Working on physical therapy for my back (which WASNT helping) and eating extremely healthy. My back had been getting worse for a few years but it finally reached a point where I begged my parents to send me to a chiropractor. They did....he fixed me up as best as he could but did notice how rigid my muscles were and suggested a massage therapist. I went to the massage therapist who couldnt believe I hadnt been in a severe car accident or something equally as bad because I was so very tight and was spasming.
He worked on me....and it helped a little bit....but not for good. Just for a few days.
None of this helped long term.

School started April 2nd. I was working four days and going to school four days. And getting about 5 hours of sleep during the day between the two. Needless to say I was exhausted and the 2nd week of school I came down with a horrific cold/flu. Was out of school and work for a week. High fever...the works. Week three....I return to both work and class....and about half way through the week...my back started to spasm. Very painfully. Bad enough that it kept me from attending classes.
Over the rest of April things started getting much worse. Severe spasming. Stabbing/electric shock/shooting/aching pains in my back, neck, arms and left leg. My left hip started locking up when walking. Severe headaches and I was very tired ALL the time.
Needless to say I went to my general practitioner to find out WHAT was going on. The first meeting I went right in to get an x-ray to check for spine problems and was given a light painkiller (Advil but stronger) and a light muscle relaxant. Neither worked at all. A week later x-rays came in showing absolutely nothing. Went in to talk to her again....my painkillers were changed to a SLIGHTLY higher dose and I was referred to a Physiatrist.

At this point its about mid May and I wake up one Thursday morning at around 6:30am to the worst pain ive EVER experienced in my neck, my entire right arm, and rib cage. Aching, burning, tingling pain. My arm was tingling and went completely numb by 8:30am when my boyfriend drove me to the ER. My chest and back felt like it was trapped in a vice and was being crushed. I was trembling and had the hardest time even spitting out my birthdate when asked by the ER receptionist. By 11:30am my boyfriend is taking me home with a prescription of vicodin and valium....which I was on for a week.
It helped the pain when I was on it.

My appointment with the physiatrist wasnt until June 28th.
Over that month of waiting my symptoms just got worse. My right hand/forearm and left leg became quite numb. The numb leg causing a limp. Constantly exhausted. The nape of my neck felt like it was set on fire one night and continued to feel raw with a non-existent sunburn for weeks. When I would get up in the morning it felt like I was walking on jagged sharp gravel and the pain would radiate up my shins. Pins and needles and electric shocks in my shoulders and arms. And I developed a tremor. My hands shake, making doing small things like putting pens back in their caps hard. My balance was terrible and I constantly had a feeling like I was drunk. When I closed my eyes sometimes I would nearly fall over.
I feel weak, easily worn out, constantly in pain. I had to take an extra day off work and I had to take a leave of absence from school entirely.

When I went into the physiatrist he took a family history (my grandmother died at age 38 of MS), took my reflexes, and did a few strength and coordination tests.

He decided the best thing to do was to send me to the Neurologist.
During the two weeks between doctors appointments my symptoms started to lighten a bit. I wasnt in as much pain, I was able to get more done at work, I was able to get back to yoga but only twice a week, my numbness in my hand and leg started to leave. I was still exhausted, still trembling, still feeling off balanced (although not as much), still experiencing the 'vice grip' pain in my back and chest, the shooting and burning pains in my neck and arms. But I was a bit better.

She asked my symptoms, I told her about my grandmother, she did a few strength and coordination tests (the same as my physiatrist) and then sent me out for blood work (8 different tests checking for B12, Lupus, muscle deterioration, etc) and scheduled an MRI for the 21st of this month.
Meanwhile....my symptoms are much better. But are still preventing me from doing most of the things I was doing with my life prior to all of this.

Went in for the MRI on my brain and cervical spine.

On the 29th (this last Friday) I went back into the Neurologist. Blood tests clean. MRI scan clean.
Nothing found other then a small nodule on my thyroid....which wouldnt cause any of this.

So now Im sitting here.....and have no idea where to go. My neurologist didnt set up any other tests. Didnt refer me to anyone else who might find out whats going on. She quite literally told me to go see my general doctor again.....even though Im still having neurological issues (that are visible even) and have no idea what they are.

This is affecting my whole life and I need to figure out what it is. But I dont have the money to just keep going in a giant circle over and over again like this. Something is obviously wrong....but so far all the doctors Ive seen havent really done much. And when they get pushed into doing something...and it comes up negative....they give up and send me home.

Any suggestions? Comments? Advice? I'd really love even moral support LoL.

Either way I look forward to reading more about MS and hearing from/about people who have dealt with this disease and how they've dealt with the doctors that comes with it.
Wish all of you health and happiness!

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Re: Hi! Currently in the loooong diagnosis process....ish...

Postby NHE » Sun Jul 31, 2011 3:39 am

Welcome to ThisIsMS. I hope that you find a supportive community here. I also hope that you can find some answers to your current health problems.

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Postby lyndacarol » Sun Jul 31, 2011 10:02 am

Welcome, Chelsea. We are glad you found us. You have written: "Any suggestions? Comments? Advice? I'd really love even moral support," and since you asked, you will find that this MS community holds NUMEROUS hypotheses, generally unaccepted by conventional medicine. Most of us are quite willing to share our ideas and answer any questions put to us. Remember, most of us are NOT physicians or scientists.

For a general overview of MS, I recommend the book, Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD.

For my personal, unique ideas… I commend your neurologist for suggesting that you go back to your GP and start again. Since I am not completely convinced that MS begins as a strictly "neurological" disease, I think a GP or internist is the right place to establish a baseline: he can order a thorough blood workup, including tests for cortisol, all the thyroid hormones (you mentioned a nodule on your thyroid), and a fasting serum INSULIN (not to be confused with glucose) test.

MY suspicions are on a metabolic problem which produces excess insulin. Discuss with your doctor the topic of metabolic syndrome and whether you could have visceral fat around your interior organs, which could be poisoning your liver and affecting the pancreas as well. The results of my fasting insulin tests have been elevated each time; 4 friends with MS who requested the test have also found elevated levels.

In the meantime, a healthy diet (low-carb in order to reduce the glucose and resulting insulin) and exercise (which will also reduce insulin) will not hurt you.

Welcome again to ThisIsMS; your inquisitive mind will be a great asset to us here.
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Postby CL » Sun Jul 31, 2011 4:16 pm

Thank you for your advice! Im definitely trying to find the best path for my healthcare at the moment. Im just interested in hearing from patients or families of patients who have dealt with the long exhausting diagnosis process. Im not looking for any actual medical advice due to the face that this is an online source....but I thought that hearing from people who've been through similar experiences might be helpful.

Ive actually read that book and know quite a bit about MS. Due to my family history ive run accross quite a bit of information over the years.

As for going to back to my GP. I started out with my GP and had tests done and my GP felt that she had done what she could and sent me to the physiatrist who in turn decided it wasnt something his speciality could help with...and sent me to the neurologist. So my GP doesnt feel like she can do anything further for me sadly. Ive had blood tests, insulin tests, and quite a few others. Everything so far has come up normal. The reason they are going to look at my thyroid is because the MRI showed a lump on it. So we'll see.

And yeah...diet is a huge thing with me. Im actually going to school for exercise science and clinical nutrition. Diet can make all the difference.

I really appreciate the advice!
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Postby lyndacarol » Sun Jul 31, 2011 8:22 pm

Chelsea – I will share with you my road to diagnosis: in 1991 I began to have the feeling of constriction around my upper left arm. Then I had tingling in my feet that gradually moved up my legs. My first MRI was normal; my neurologist told me that I definitely did not have MS!

Two more MRIs were normal. My GP said I had thoracic outlet syndrome, said MOST people improved after the removal of the first rib, and lined up the surgeon!

I went to the Mayo Clinic for a second opinion. After two weeks of testing there, the conclusion was that I did NOT have thoracic outlet syndrome, but had a herniated disc. The following week I had an unsuccessful (the disc could not be removed because of scar tissue) cervical laminectomy in Rochester, Minnesota. My symptoms never improved; in September 1992 another MRI revealed lesions and my new neurologist diagnosed MS.

Chelsea, you wrote that you have had insulin tests with normal results. My first result was 12 UU/ML, which according to the lab is normal; however, I encourage you to read the following:

Factor # 1 : Your Insulin Level
Insulin is absolutely essential to staying alive, but the sad fact is that most of you reading this have too much floating around, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.
Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.
You body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.
However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin resistant, and then diabetic.
If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.
Compounding the problem, when your insulin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.
Your Fasting Blood Insulin Test
To find out your insulin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin test, The test is done by just about every commercial laboratory and is relatively inexpensive.
Facts about Your Fasting Insulin Test:
• This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.
You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.
• This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.
• If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.
• Exercise is of enormous benefit in improving the sensitivity of your insulin receptors, and help normalize your insulin level far more quickly.

In your area of study of exercise science and clinical nutrition, have you covered skeletal muscle insulin resistance? If so, could you direct me to information sources for the topic?

So glad to have you here!
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Postby CL » Tue Aug 02, 2011 9:23 pm

Thank you for sharing! Its much appreciated.

We have covered the different types of insulin resistence quite a bit. Most were lectures and in health text books. Outside of classes The China Study book covers it a bit and I would suggest, if you want internet sources, looking up medical journals, the mayo clinic website....resources that are ligitimate. There are also a lot of documentaries that cover this subject. But to be honest my personal opinion is that the best way to learn about it is either have an in depth convorsation with a specialist or take a class on it. Everything other then those two options will give you information but nothing complete or overly informative and can sometimes be very biased on some subjects.
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Re: Hi! Currently in the loooong diagnosis process....ish...

Postby cristeach » Wed Nov 02, 2011 6:42 pm

been trying to get dx for almost a year. Been through a pain dr, Neurologist, Rheumy, and now the Neuro has sent me to a Neurologist that specializes in Diagnosing & treating MS. After normal MRI's, LP, and bloodwork, my neuro thought it was Somatization. In my head basically. The Specialist ordered a Sensory Evoked Potential test and I finally 10 months after symptoms started got my 1st abnormal result. I am now one more test away from a definitive diagnosis and treatment. I share all that to say don't give up there were many times I could have given up along they way but being paralyzed and in a wheelchair for 3 months the first attack and several times since has spurred me on to not give up. I can't say enough about finding the right doctor. My reg neuro is a great guy but all thes tests he had done came back normal. The specialist said that its common for many lesions not to show on MRI due to location or size and that the SEP is much more accurate than MRI's. I will be going back to my reg neuro for treatment if the SHANDS dr will not treat me but am very thankful that although he was unsure he referred me to someone else who could help. So, keep fighting the fight until you get answers that make sense.
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Re: Hi! Currently in the loooong diagnosis process....ish...

Postby want2bike » Thu Nov 03, 2011 6:31 am

There are other problems which give similiar sympthoms of MS. Mercury poisoning is one of them. I can relate to your back problems. I had muscle spasms in my back which gave me the worse pain of my life. My problem was the many root canals and amalgam fillings I had in my mouth. I started the Swank diet thinking it could be the solution but didn't get any relief until I started a detoxification program to get the mercury out of my body. Got my teeth taken care of and haven't had a muscle spasm since then. It is something to look at.

http://www.videosurf.com/video/multiple ... s-81761590
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