A Month of Symptoms, Just Diagnosed

A forum dedicated to the younger people living with MS reflecting their unique concerns.
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A Month of Symptoms, Just Diagnosed

Post by itzmesarahb » Mon Sep 17, 2012 4:34 pm


I'm trying to make sense of my confirmed diagnosis of ms. At times I feel overwhelmed and want to cry and have the world go away. I grew up knowing a friend's father who had ms and had no ability to walk and had to use a powered wheel chair. While, I know from reading and from others' experiences, multiple sclerosis doesn't always progress to that level.

To begin with, I had numbness and tingling in my hands and feet. I thought nothing of it the first day I experienced, considering I was excited to go to an amusement park and tossed and turned all night. I figured I slept incorrectly and that my limbs falling asleep was nothing. I'm always crossing my legs and having a leg fall asleep and that sort of thing so I thought nothing of it. However, the tingling and numbness persisted all day. I was petrified. I was in a lot of pain, and every step felt like a shock of pain and sitting still was painful too. The following day I woke up late, exhausted, and in confusion when I still had symptoms, my doctor's office closes early on Fridays and unfortunately I would not make it there in time for a walk-in appointment. I scheduled an appointment for Thursday (to not interrupt having to work in retail and odd hours) and after talking to a Triage nurse (I think I'm using the correct term, forgive me if I'm not) I talked to my mom and we headed for urgent care. Upon reaching urgent care, my insurance was denied and upon having to pay all the expenses out of pocket. So we decided to leave and just wait it out.

Several people I talked to mentioned it being diabetes or a pinched nerve. My father has diabetes and was able to show me how to test my own blood sugar. My blood sugar was at an 87 and so my family calmed down when my dad said that he was only tingly when he had high blood sugar and mine was nowhere near high. I got a full body massage (my first) on the following Monday and while that made me feel better, it didn't fix anything. I was awaiting going to the doctor until Wednesday when I suddenly had numbness in my left ear and my head. We headed to urgent care again and with a different staff person on duty, they accepted my insurance. I once again got a blood sugar test, the doctor tested out my balance and reflexes, and then I got an x-ray of my head and neck. After looking at the x-ray the urgent care doctor saw a lot of tension in the neck built up and thought it most likely was a pinched nerve. I then got a steroid shot in my hip to help with the tingling. The doctor suggested I keep the appointment with my regular doctor.

I went the next day, Thursday to my appointment and after going over everything my doctor said it can't be a pinched nerve due to tingling in my hands and feet and my ear. He thought it was probably just stress-related and due to my tendency to hyperventilate (I have Generalized Anxiety Disorder, Panic Disorder, and Post-Traumatic Stress Disorder as well). However, he wanted to eliminate other possibilities so he wanted some blood work done first and then an MRI if the blood work came back normal. I got the blood work done the same day and I got the results the following Friday.

Once that happened, I was debating about what to do concerning the MRI. The doctor made it sound like I was probably just stressing myself out and if I were to relax the symptoms should improve and go away. While I have insurance, it is not very good and at this point I knew that I had over $600 in medical bills coming my way. My regular doctor had wanted to put me on anxiety medication and I didn't want to agree to it until we had ruled out other possibilities. At this point though I was wanting to delay the MRI and decided to think on it for a couple of days. So I did, however a couple days later, I notice some blurriness in my vision and I think about it and I'm due for some new glasses and at night driving home, I feel like there are two sets of lines.

I head the optometrist on my day off from work and I find out that I have double vision. Everything seems fine with my eyes, it's just the muscle in my right eye acting up or something. However, I get a referral to an ophthalmologist and off I go. I get examined and I hear what the optometrist says once again. The ophthalmologist says I need to get that MRI and that I might need to go to a neurologist and if my eyes don't get better in a couple of months, to come back and see him again. He told me most of the time, double vision will go away on its own in cases like mine.

I scheduled an appointment for an MRI and the soonest I could get it with a place that took my insurance in my area was about a week later. I waited a week and on the day of the appointment, the MRI machine was broken. I was devastated and a panic attack ensued. Immediately, my dad started making calls and he got me an appointment two days later at another place. They mentioned getting a sedative (when my dad mentioned panic attacks) and my doctor phoned in a prescription for Valium. I took the MRI and very calmly fell asleep afterwards without a care in the world.

A week later I had an appointment with my regular doctor to go over the results, that was this past Friday. He was distraught upon seeing the situation with my eyes (as it is/was clear I have double vision). He then had me switch seats my mom so I could look at the MRI results. The radiologist and my regular doctor both saw my MRI and with my symptoms, agreed on a multiple sclerosis diagnosis. It was not a possible diagnosis, it was an actual confirmed diagnosis. I was at first exceedingly happy that the tingling wasn't all in my head. It was a relief until the diagnosis set in. I got a steroid shot in my "hip" (actually a butt cheek, but what is with them calling it my hip?) for the inflammation and a lot of the words blurred and I was in a surreal world where I was diagnosed with a lifelong disease that would break my bank account and max out my insurance in 3 months. I got an appointment with a neurologist my dad has gone to in the past and am beginning to process this whole mess.

In the past couple of days, I have gone through tons of websites and information and everything is making so much more sense now - my loss of balance, my sore muscles, my fatigue, when I haven't done enough activity to warrant such issues. When I was in the back room at work which is not air conditioned, I felt the tingling worsen. I thought I was going crazy. When I read that such things were common, it made so much sense.

I guess I just needed to share my journey so far. I'm 23 years old, a white female. I live in the northern United States. I guess I want to know where to go from here. What do you guys find that helps? How do you guys deal with processing the fact you have m.s. when you're so young and never realized such an outcome was so close?

Sarah B.

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Re: A Month of Symptoms, Just Diagnosed

Post by lyndacarol » Tue Sep 18, 2012 5:09 pm

Welcome to ThisIsMS, Sarah. Thank you for sharing your story with us. Many of us share part or all of your experience. You asked what we find that helps…. although the "experts" and, even the MS Society, encourage the use of disease-modifying drugs (DMDs), I have tried three of them (Betaseron, Avonex, Copaxone – injectable drugs) and found no benefit with any of them and they have their own side effects (and they are QUITE expensive, for an individual or the insurance company) – I choose now not to use any medications. The published rates of effectiveness for ANY MS drug is no better than the rate for a placebo. I think diet is the most effective; the story of Dr. Terry Wahls and her dramatic improvements with diet and exercise are compelling (http://www.TerryWahls.com).

I am not confident that any effective medication will be found until the cause of MS is identified – there are many hypotheses but no confirmed CAUSE yet. My own suspicion is that my pancreas is not working properly and is producing too much insulin; I urge everyone to request a "fasting blood insulin test" from his doctor. (The insulin test is not the same thing as a glucose test!) A good result is 5 UU/ML; the optimal result is 3 UU/ML or lower – my results have never been lower than 9.

I am confident that the answer to MS will be found soon. I encourage you to be hopeful with me.
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: A Month of Symptoms, Just Diagnosed

Post by mm430 » Fri Oct 19, 2012 6:52 am

You know, I wish had some one tell me this 4 years ago. I was 20 and devastated. I thought my life was over. It gets better, it really does. At least now, there's pills. When I was diagnosed, it was only shots. Frankly, unless I'm having a problem, I don't even think about it. First finding out is scary, but in a few years, you won't be obsessing about it anymore. Life goes on. You can still be a productive person. I graduated college, got married, and recently bought a beautiful house. Your life isn't over. I promise.

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Re: A Month of Symptoms, Just Diagnosed

Post by dez2000 » Mon Nov 12, 2012 3:08 pm

There is hope and help. MS is difficult to deal with but can be cured. Posted on this site is the Klenner Protocol.

Dr. Klenner is quoted in the Journal of Orthomolecular Medicine as saying that "some physicians would stand by and see their patient die rather than use ascorbic acid because in their finite minds it exists only as a vitamin."
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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