new diagnosis- fast diagnosis

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new diagnosis- fast diagnosis

Postby aetex » Wed Oct 29, 2014 5:06 pm

Hello
Since I read this forum a few times a week, I figured I may as well register and introduce myself!
I'm 34 and was diagnosed after a whirlwind of less than 6 months of symptoms. On May 29, I was walking across the parking lot at work when my feet both suddenly went numb, as if they were asleep. The tingling persisted for days…then weeks..and random other symptoms started happening. Numb spots on my soles, hypersensitivity on my lower legs, complete loss of sensation on the back of my thighs, burning hot sensation in my toes and for about a week I could not curl my toes no matter how hard I tried.
I knew something was wrong and called to make an appointment with a PCP. The nurse practitioner examined me and said, "well, what do you think you have? I'm not sure." Since I could walk, see, think and feel I don't think she thought it was really too big of a deal. She decided to order a thyroid panel and blood count. I suggested a B-12 level and she agreed that was a good idea. Results were normal.
June- So I called another PCP. He saw me, asked me what I thought (I should say that I am a PA student, so my doctors always like to know what I'm thinking and use it as a teaching moment) and I told him, “I don't know. This doesn't fit anything quite like the textbook, but I know something is wrong.” He offered me an EMG or a neurology referral. I opted for the neuro referral.
July- Neuro gave me an appointment for November. My symptoms persisted yet were always changing. I called the office all the time to get my appointment sooner and they never had a spot available.
August- I went to the student health one day for a cough or something. I commented on the trouble I was having getting into a neurologist. I'm sure my tears as I described my symptoms helped my case and before I left the student health office a phone call had been made and a neurologist appt was two days later (moved from November to August- not bad!).
I will never forget what the neurologist told me two days later-- "I don't think this is MS, I think its something completely different-- I am ordering an MRI because when a 34 year old woman has sudden neuro symptoms, it is stupid to not order this test. You don't have to go if you don't want, your symptoms might just go away." At that point my symptoms were not bothersome. I felt like I was walking on a stack of quarters in my shoe, but really not much else. I realized around that time that my feet never hurt at the end of a long day, even when wearing bad shoes. Sometimes there are benefits to decreased sensation, I guess. Heat started bothering me too. I especially noticed when making the walk to the river with my mom and I started to cry as my legs started to tingle and feel “drunk” on the path I have taken so many times before. Getting into that cold river never felt so good and healing as it did that day.
One week later, the neurologist called… I only remember-- lesions, on brain and spine… had a colleague look at it…--MS clinic has accepted you as a patient, they will call---
That was the end of August. Met with my MS neurologist in September, had tentative diagnosis of MS at that point and he ordered about 9 vials worth of blood and an LP. I told him, and he agreed, that I wanted to start treatment as soon as possible. After my LP results were back we met again. My official diagnosis was on October 13. I started copaxone on October 19.
Everything seems to be a blur since that MRI. Somehow, I managed to finish PA school and am preparing for board exams in a couple of weeks. I think once all of the rest of my life slows down a bit, I might be processing this differently but for now I just keep going day to day and am doing what I can to stay healthy, strong and smiling. My family and friends are incredible. Thank God for that.

I have NEVER had a symptom before in my life no matter how far reaching I go. My family is healthy. I am healthy. My only abnormal lab was Vitamin D deficiency, which is ironic since everyone who knows me knows I love the sunshine. I have been vegetarian since I was 16. I grew up in Arizona and have lived all of my adult life in Texas, except for a 2 year stint in Northern Colorado. I am fortunate that my symptoms have been sensory only as of yet.

So thats it… this forum is very helpful. Thanks for all the information. I hope that I may be able to help someone else along the way as you all have helped me.
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Re: new diagnosis- fast diagnosis

Postby NHE » Wed Oct 29, 2014 9:46 pm

Hi Aetex,
Welcome to ThisIsMS.

aetex wrote:I have been vegetarian since I was 16.

MS is a diagnosis of exclusion. One of the conditions that can mimic MS is vitamin B12 deficiency as it can cause a range of neurological symptoms including paresthesia (numbness and tingling), brain and spinal cord atrophy and lesions on MRI. Vitamin B12 is only found in animal products so a vegetarian diet puts you at risk of being B12 deficient. It's the first thing I would have your doctors check. Many labs in the US use an acceptable range of around 200 - 950 pg/mL. However, someone at the lower end of this scale can still be deficient. In contrast, Japan uses an acceptable range for B12 from 500 - 1200 pg/mL. For someone experiencing neurological symptoms it's best to be at 550 pg/mL or higher. If you're already taking B12 supplements, then using a sublingual methylcobalamin form is best. They're inexpensive and available from most retail supplement suppliers. You can read more about B12 deficiency in the following thread. natural-approach-f27/topic24857.html
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Re: new diagnosis- fast diagnosis

Postby NHE » Thu Oct 30, 2014 12:27 am

Hi Aetex,
I reread your post. I see that your B12 level was already tested and that your doctor said that it was normal. However, it could still be a problem if it's in the lower end of the range. I had my B12 tested last Spring and it turned out to 247 pg/mL and the range was 247-925 pg/mL. The nurse said "Well, you're still within the range." Fortunately, I didn't listen to her. Moreover, my doctor said that I was "Definitely deficient." Sometimes normal is a matter of interpretation.
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Re: new diagnosis- fast diagnosis

Postby aetex » Thu Oct 30, 2014 7:08 am

Thanks for your response.
My doctor is very thorough and has rechecked the B12 as well as checked the B6. Both are in the high level of normal. And I don't think B12 deficiency would cause spinal and brain lesions along with oligoclonal banding in the CSF. Believe me, I do wish this was nothing but a vitamin deficiency!
I'm surprised how many people get diagnosed without a full spread of blood tests to exclude so many other causes of MS symptoms.
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Re: new diagnosis- fast diagnosis

Postby Youarethecure » Thu Oct 30, 2014 9:54 am

Hello, welcome to the site. There is a lot of knowledge that can be gained from here. I am 25 years old and male, diagnosed early this year.

I also am on copaxone. I did my 99th shot yesterday. Diet, nutrition, exercise, and life style also play BIG roles in what can be done against MS. I see a chiropractor as well which has definitely helped me.

Its not the end of the world, just a different (harder) path through life. It makes me appreciate life much more. Especially when I am mostly symptom free. I am the happiest man in the world most of the time... at least for now.

I hope the best for you,

Chris
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Re: new diagnosis- fast diagnosis

Postby lyndacarol » Thu Oct 30, 2014 11:04 am

aetex wrote:My doctor is very thorough and has rechecked the B12 as well as checked the B6. Both are in the high level of normal. And I don't think B12 deficiency would cause spinal and brain lesions along with oligoclonal banding in the CSF. ...
I'm surprised how many people get diagnosed without a full spread of blood tests to exclude so many other causes of MS symptoms.

I am glad to hear that a B12 blood test was done; however as you probably know, the serum B12 test alone is not reliable for detecting a B12 deficiency. A serum homocysteine test, a serum methylmalonic acid test, and sometimes the HoloTranscobalamin test are also done to confirm the results. Perhaps your doctor has done these confirmatory tests and that is what you mean by "rechecked."

NHE shared important information on lab test ranges. Standard ranges are established locally; there can be differences from lab to lab (even country to country, as he pointed out).

It is my understanding that a B12 deficiency can indeed cause lesions and oligoclonal bands in the CSF.

In your initial post you say, "My only abnormal lab was Vitamin D deficiency… I love the sunshine." Given that situation, have you considered a gluten sensitivity that might interfere with vitamin D absorption from the diet (gluten can damage the intestines, interfering with B, D, or other nutrient absorption – how is your magnesium, zinc, other levels?) or an inability to manufacture vitamin D through the skin (chronic sunscreen use, insufficient cholesterol, sulfur problem?)?

Just trying to offer possibilities for your consideration.
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Re: new diagnosis- fast diagnosis

Postby aetex » Thu Oct 30, 2014 3:14 pm

Thanks to each of you for your comments and attention to my story. I do appreciate it greatly.

Chris- Thanks for the note. I am about to take my 6th shot, its hard to believe you got to 99 so quickly! I feel great right now, and have a new appreciation to this life and the ability to walk, run and go to work each day. This has caught my attention for sure and has made me change my perspective on so many things I agree that diet and lifestyle will affect this disease as much as meds or time and I am making changes to my diet, adding some supplements, researching a LOT, getting good sleep, being active and removing as much stress as possible. I'll do what I can and hope for the best!

Lyndacarol- My B12 level was checked twice...The first one was done at an outside lab with different ranges of normal and my doctor ordered it again, along with the other tests mentioned (homocysteine, etc.). So, yes, I am quite confident that this avenue has been explored. In addition, since I have been vegetarian for so long I have always been aware of a risk of being deficient and have had it checked numerous times over the years. I am interested to look into the link between B12 and banding in CSF, I have been reading and taking in so much over the last few months that I can't keep track!! I will definitely be reading about that some more. Sounds interesting...
Considering that I have never had any malnutrition disorders, have never had any GI issues, and have normal levels on all of my lab work, I will venture to say that I do not have celiac disease or gluten sensitivity. All of the zinc, magnesium, copper, etc levels were normal. I agree that there may be a problem in processing Vitamin D that was not from a dietary source, but this is a mystery of our society, as so many people are deficient in Vitamin D, no matter how much UV exposure they are getting. I have also read theories that vitamin d deficiency is not a cause of MS, but MS may be the cause of an inability to absorb/process vitamin D. Either way, I have gotten both of my sisters on Vit d supplements from the moment of my earliest doctor's visits. Thanks for all of your info :)
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