This Is MS Multiple Sclerosis Knowledge & Support Community

I was trepedacious about coming on forums before even getting my MRI but I feel like I just need to put my feelings out there, in an effort to let go. I have joined two, not knowing yet which forums are active (some appear open but no one posts).

My story, like many here doesn't just happen over the past few months, but now I believe over years. I feel like so many seemingly autonomous symptoms, may in fact, be strung together. It wasn't until a few weeks ago when I sat down to make a list for my doctor, that I realized that perhaps they were all linked into a bigger health issue.

I have what I consider chronic pain a majority of the time, but like many, it's part of life and I deal with it. But over the course of the last few months, I feel like more and more issues (and pain) has presented itself. I have joint pain (incredible hip pain that flares up.) It's been so bad, I actually wake up from sleep.

Two weeks ago, I went out to move my car and my left eye became fuzzy. I am a migrainer (my whole life), and have previously (no more than maybe 4 times in my life) experienced 'auras' with a migraine. This time, the visual disturbance felt different and lasted longer than normal. Eventually after a couple of hours, my vision went back to normal. I didnt have a migraine. My thought was that perhaps my migraines were changing how they present and just made a mental note. Along with this however, came tingling in my hands and feet. Tinglling, numbness and especially in my hand, pain.

This numbness has been getting progressively worse over the course of a month.

In recent months, I've been dizzy, dropped cups and plates unexpectedly and just felt more clumsy at times. Of course, being a mom and leading a busy life, I tried to put it down to stress. After missing a step on the stairs, I felt like perhaps this wasn't the case.

Additionally, I have had a few episodes of pain in my chest. Strange, painful discomfort. Like, someone was both crushing me on my left side and stabbing my left breast/chest/rib area. It's hard to breath, and feels like a miz of heart and panic attack but is neither. One episode lasted several minutes while another came and went in little time. (Though the pain felt like forever.) I had this listed as something to speak to the doctor about, but never did. Now, I fear it may have been an early symptom that I never connected. MS hug? It takes my breath away every time and is so scary.

I went to the doctor and she gave my a shot for my migraine, but it didn't remedy anything. On Wednesday last week, the tingling was so alarming I went right to the clinic and they got me in.

They tested my blood for all sorts of things, to include b12 deficiency and lead. All are negative.

The doctor also did an exam and even mentioned that MS was not on the top of his list. But another doctor called and told me she wanted an MRI within 2 days. So, I go in tomorrow.

I spoke to my therapist yesterday. Told him what was going all. I appeared composed and logical. Maybe it is, maybe it's not. That didn't last. I realize, I am scared. That there is something wrong, but I don't know what. Something is happening with my body and it's not right. I can't describe it. As I type, my hand and feet feel tight and tingly.

My understanding is that sometimes they don't even see lesions, so what if they don't? What then? The symptoms I am experiencing are real, yet I feel like without lesions, they can't do anything to help me. I don't want MS, but not knowing is very difficult. I hope you know what I mean. The doctor said she needs a baseline, a comparison for future. That scares me too. I just want to be healthy again.

I'm scared. But I'm holding it together.
I'd love to hear your thoughts. Thank you.

opheliaisms wrote:On Wednesday last week, the tingling was so alarming I went right to the clinic and they got me in.

They tested my blood for all sorts of things, to include b12 deficiency and lead. All are negative.

...
I'd love to hear your thoughts.

Welcome to ThisIsMS, opheliaisms. We are glad you have found us.

You have said that you went to the clinic Wednesday of last week; they tested for B12 deficiency and all were negative. Precisely which tests were done? The HoloTc test? The serum homocysteine test? The methylmalonic acid test? Do you have copies of your results? And your lab's standard ranges? If you are willing, will you share the actual result numbers with us?

https://www.dropbox.com/s/bezul3ypnpszd ... d.png?dl=0 According to the test results, I am in the normal-low range.

My MRI came back clean. The doctor called the MS clinic and based on my symptoms, they would like to get me in. They can do additional testing and rule out MS, or confirm I supposed. I should be able to get in next week.
I'm so tired. Emotionally and physically, it's overwhelming.

opheliaisms wrote:https://www.dropbox.com/s/bezul3ypnpszd ... d.png?dl=0 According to the test results, I am in the normal-low range.

My MRI came back clean. The doctor called the MS clinic and based on my symptoms, they would like to get me in. They can do additional testing and rule out MS, or confirm I supposed. I should be able to get in next week.
I'm so tired. Emotionally and physically, it's overwhelming.

I assume the tests listed in your link were the ones you had drawn and performed last week. I have no medical background, but I will share what I know:

An elevated methylmalonic acid test result is one of the symptoms/signs of B12 deficiency.

Within your CBC (complete blood count), there is a line labeled MCV (mean corpuscular volume). An MCV value in the high-end of the lab's standard range indicates enlarged red blood cells (a sign of megaloblastic anemia), which can be due to a B12 deficiency.

The "serum B12" test is outdated and often unreliable (It measures total B12 in the bloodstream.). The newer, more accurate HoloTranscobalamin (HoloTc) test measures the "active B12" which can reach the cells. It is possible to have adequate B12 in the blood, but still be deficient in the cells.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

As for your serum B12 result, many scientists believe that the standard range at US labs is set too low.

On page 11:

"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury."

Compare your B12 test results to those recommended by the authors.