This Is MS Multiple Sclerosis Knowledge & Support Community

Hello all, it's nice to "meet" you!

I'm a soon-to-be 28 year old with two kids, 4 and 2. I've had some symptoms of MS for a few years now, but I'd always attributed most of them to having kids (of course you're exhausted and can't get out of bed, why wouldn't your hands twitch when you work on a computer all day, your vision is blurry because the kids/work are frustrating, it's just stress, etc., lack of bladder control/hesitation is from childbirth, etc etc...)

Recently things have progressed to a point where I couldn't just brush it off anymore. My husband even called the squad on me about 6 weeks ago. I knew what I wanted to say in my head, but just couldn't spit the words out. (For example, our cat was doing something cute by the door, I KNEW that it was a cat, but I couldn't make myself say CAT... so I just said "look at that...that...um...er...animal). He thought I was having a stroke. My fingers, hands and sometimes one arm will randomly spasm and twitch frequently, I get the pins and needles, mostly in my arms or feet. Headaches, just a general feeling of malaise. Oh and the fatigue... OH how awful that is. It's like I literally can't get up and do anything some days. I have a history of anxiety, but this is different, plus I'm feeling depressed now as well.

I've had an MRI with/without contrast on my brain and spinal cord. Spinal was mostly normal minus "mild spondylitic disease" (??) but the brain one showed "several white matter punctate foci" primarily in the frontal lobe that showed changes with contrast. I'm not entirely sure what that means, but was told it could indicate MS. (Or changes from migraines, but I don't think I've had enough migraines to have it show in an MRI? Who knows...) I also get confused easily and have trouble concentrating, which is just so unlike me (or at least who I thought I was...) I am a copywriter by profession, so struggling with words is very... frustrating for me.

Anyway, I just sent off the disc from my MRI to the neurologist this week, so hopefully they'll be able to schedule me with their MS Specialist in January. Any advice, insights, commiseration is greatly welcome and appreciated!

Peace.

MamaSquirrel wrote:Hello all, it's nice to "meet" you!

I'm a soon-to-be 28 year old with two kids, 4 and 2. I've had some symptoms of MS for a few years now, but I'd always attributed most of them to having kids (of course you're exhausted and can't get out of bed, why wouldn't your hands twitch when you work on a computer all day, your vision is blurry because the kids/work are frustrating, it's just stress, etc., lack of bladder control/hesitation is from childbirth, etc etc...)

Recently things have progressed to a point where I couldn't just brush it off anymore. My husband even called the squad on me about 6 weeks ago. I knew what I wanted to say in my head, but just couldn't spit the words out. (For example, our cat was doing something cute by the door, I KNEW that it was a cat, but I couldn't make myself say CAT... so I just said "look at that...that...um...er...animal). He thought I was having a stroke. My fingers, hands and sometimes one arm will randomly spasm and twitch frequently, I get the pins and needles, mostly in my arms or feet. Headaches, just a general feeling of malaise. Oh and the fatigue... OH how awful that is. It's like I literally can't get up and do anything some days. I have a history of anxiety, but this is different, plus I'm feeling depressed now as well.

I've had an MRI with/without contrast on my brain and spinal cord. Spinal was mostly normal minus "mild spondylitic disease" (??) but the brain one showed "several white matter punctate foci" primarily in the frontal lobe that showed changes with contrast. I'm not entirely sure what that means, but was told it could indicate MS. (Or changes from migraines, but I don't think I've had enough migraines to have it show in an MRI? Who knows...) I also get confused easily and have trouble concentrating, which is just so unlike me (or at least who I thought I was...) I am a copywriter by profession, so struggling with words is very... frustrating for me.

Anyway, I just sent off the disc from my MRI to the neurologist this week, so hopefully they'll be able to schedule me with their MS Specialist in January. Any advice, insights, commiseration is greatly welcome and appreciated!

Peace.

Welcome to ThisIsMS, MamaSquirrel.

I am holding you to your statement, "Any advice, insights, commiseration is greatly welcome and appreciated!" Here are my thoughts:

Your symptoms are consistent with a vitamin B12 deficiency. (Lesions in the brain are found with B12 deficiency, as well as MS, and even migraines.) In my opinion, this B12 area is the first likely condition that your GP (or certainly your neurologist) should be testing for.

Please watch "Everything You Want Your Doctor to Know about Vitamin B12"
Notice especially Pacholok's comment that a B12 deficiency and MS look the same… that you can't tell them apart.



I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Consider seeing your PCP and discussing this possibility, even requesting #1 a serum B12 test (This test alone is not adequate to determine a deficiency.), #2 a serum homocysteine test, and #3 a serum or urinary methylmalonic acid test. Do not take B supplements before these tests as doing so will skew the results. These three tests (along with a high MCV value) are used to assess a possible deficiency in the blood; additional testing might be required to assess a deficiency in the tissues.

Any person at any age can develop a B12 deficiency. Pregnancy and breast-feeding draw especially on a woman's B12 stores. If you are found to have a deficiency, it is easily and inexpensively treated. If caught early, B12 deficiency symptoms are usually reversible.

We wish you all the best; please let us know how it goes with you.

Thanks lyndacarol, I will mention further B12 testing to my neurologist when I finally get an appointment nailed down. My PCP did a full screen blood panel and my B12 was in the mid-high range of normal (I think it was 660, though I understand other types of tests could show a different result?)

MamaSquirrel wrote:I will mention further B12 testing to my neurologist when I finally get an appointment nailed down. My PCP did a full screen blood panel and my B12 was in the mid-high range of normal (I think it was 660, though I understand other types of tests could show a different result?)

I assume your PCP ordered a complete blood count (CBC w/diff); if so, check the MCV (mean corpuscular volume) value. A number in the high end of the standard range indicates enlarged red blood cells (macrocytosis) and this condition is a late sign of B12 deficiency. On my latest CBC, my MCV value was 95.2 (standard range: 82.0-96.0 fL). Like yours, my B12 test result (at 827; standard range: 213-816 pg/mL) appears to be quite good. Unfortunately, the B12 test alone is not reliable; it is influenced by many factors, for example, high folic acid intake (by supplement or fortified foods) can mask a deficiency – in the US, flour and MANY foods are fortified with folic acid. Maternity vitamins are HIGHLY weighted on the folic acid and can mask a deficiency!

As a copywriter, you must have an interest in books; 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/

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.

The authors recommend that patients presenting with neurological symptoms should seek to maintain at least 1000 pg/mL. (Humans and mammals are born with 2000 pg/mL.)

Many experts today consider the HoloTranscobalamin (HoloTc) test to be a more accurate assessment of a deficiency.

Thank you. Yes, they did a full blood panel. I was off on my B12 levels, they were only 594 with a range of 200 to 1100 , my MCV is 89.8 with a range of 78-94.

Hello and welcome.

I can relate to many of your issues, things I have been through. I am also on the younger side like you. I will be 26 in two months.

If it is MS just know its not the end of the world. Know that there are many things you can do that fights against the disease. Diet, medication, exercise/lifting, nutrition, and life style changes all make a good difference against MS.

Best wishes,

Chris