34 year old mom; numb and waiting for tests

[reina]

Hello Everyone,

Thank you for creating a subforum just for us who are waiting to see if we have MS or not; it's very kind of you to offer this space. I'm really struggling. A week ago I started having numbness in my face. I expected it to go away and it hasn't. Instead, it has spread to much of my body. It's not a complete dead feeling. It's hard to describe but it's as if a limb 'fell asleep' and I moved it before it was too badly affected. My face is the worst but my legs, back, feet and hands all feel weird. I'm exhausted beyond reason as well and having muscle twitches.

I went to my local hospital's Urgent Care over the weekend because I was feeling so numb that I was starting to panic. I asked for a CBC and all of the nutrient testing they could do. The doctor was more skeptical, insisting that it was more likely diabetic neuropathy -- even though I'm not diabetic and have never had a high glucose reading. (To be fair to him, I guess, I am obese at 200lbs but fully mobile and have no further chronic health complaints). He told me flatly that at 34 I'm too young to have b12 deficiency symptoms, even though I have had b12 deficiency before that 'resolved' years ago.

Rationally, I know this is likely a vitamin deficiency (or deficiencies) but having the doctor laugh at my suggestion that it could be b12 completely shook me. When the glucose readings were normal, he shrugged and said that I would probably need to see a neurologist but that I definitely needed to lose weight.

Feeling depressed, anxious and like my whole life is over right now. I honestly wouldn't care if I died except that I have a two year old who needs me and I don't want to abandon him or be unable to parent. I'm waiting for the hospital to send test results back to my doctor, which should hopefully happen today. Thanks for listening.

[lyndacarol]

I'm really struggling. A week ago I started having numbness in my face. I expected it to go away and it hasn't. Instead, it has spread to much of my body. It's not a complete dead feeling. It's hard to describe but it's as if a limb 'fell asleep' and I moved it before it was too badly affected. My face is the worst but my legs, back, feet and hands all feel weird. I'm exhausted beyond reason as well and having muscle twitches.

I went to my local hospital's Urgent Care over the weekend because I was feeling so numb that I was starting to panic. I asked for a CBC and all of the nutrient testing they could do. The doctor was more skeptical, insisting that it was more likely diabetic neuropathy -- even though I'm not diabetic and have never had a high glucose reading. (To be fair to him, I guess, I am obese at 200lbs but fully mobile and have no further chronic health complaints). He told me flatly that at 34 I'm too young to have b12 deficiency symptoms, even though I have had b12 deficiency before that 'resolved' years ago.

Rationally, I know this is likely a vitamin deficiency (or deficiencies) but having the doctor laugh at my suggestion that it could be b12 completely shook me. When the glucose readings were normal, he shrugged and said that I would probably need to see a neurologist but that I definitely needed to lose weight.

Feeling depressed, anxious and like my whole life is over right now. I honestly wouldn't care if I died except that I have a two year old who needs me and I don't want to abandon him or be unable to parent. I'm waiting for the hospital to send test results back to my doctor, which should hopefully happen today.

Welcome to ThisIsMS, reina.

A week is a short time, but I understand your concern – especially since you have a two-year-old. Take a deep breath. I am confident that you will be able to handle this situation – moms are capable.

The doctor at Urgent Care was COMPLETELY wrong! Any person AT ANY AGE can develop a vitamin B12 deficiency. Even INFANTS have had B12 deficiency! (And a doctor who laughs at a patient's suggestion is absolutely unprofessional!) Your symptoms are common to many conditions. I think you are wise to begin by looking nutrient testing.

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/

I suggest that you make an appointment with your GP. Take a written list of your symptoms for discussion at your appointment. Request a vitamin D test (a.k.a. 25-hydroxyvitamin D) – being overweight/obese puts a person at increased risk for vitamin D deficiency. Ask for THOROUGH testing for a possible vitamin B12 deficiency (This should include 4 tests: 1) a serum B12 test, 2) RBC folate test, 3) a serum homocysteine test, and 4) methylmalonic acid test.).

Your test results are being sent to your doctor; ask his office to send you your own copy, too. In the future, always request your own copy of any test results – it is important to have the actual numbers.

[ElliotB]

You may want to be patient as your doctor's try to figure out what is going on. You may also want to consider seeking professional help to assist you through this emotionally troubling time until you are feeling better.


If you are not exercising, you may want to start. It is hard to feel 'down' when you exercise regularly (daily for reasonable periods of time - if you don't exercise regularly now, start slowly and build up. Building up to about an hour or more a day is perhaps a good goal over a reasonable period of time. Your son will probably enjoy long rides in his stroller!)

[reina]

Hello Everyone--

Thank you for your replies. I've been taking your advice about B12 and exercise to heart since this all started and I'm trying to eat better. I just got all my test results back as the counts needed to be rechecked and haven't talked to my doctor yet. The results are available online.

So far, since my Tuesday visit, I've been prescribed (and have been taking)
1 weekly b12 shot
10000 uL D3, weekly
daily multivitamin
1 mcg folic acid, daily

WBC 3.8 - 10.8 10*3/uL 9.2
RBC 3.80 - 5.10 10*6/uL 5.57
Hemoglobin 11.7 - 15.5 g/dL 11.5
Results were rechecked.
Hematocrit Blood 35.0 - 45.0 % 38.2
MCV 80.0 - 100.0 fL 68.5
MCH 27.0 - 33.0 pg 20.6
MCHC 32.0 - 36.0 g/dL 30.0
RDW 11.0 - 15.0 % 17.4
Platelets 140 - 400 10*3/uL 292
MPV 7.5 - 11.5 fL 8.8

Neutrophils Relative 49.5
Lymphocytes Relative 36.4
Monocytes Relative 7.8
Eosinophils Relative 5.2
Basophils Relative 1.1
Neutrophils Absolute 1.5 - 7.8 10*3/uL 4.6
Lymphocytes Absolute 0.8 - 3.9 10*3/uL 3.4
Monocytes Absolute 0.2 - 0.9 10*3/uL 0.7
Eosinophils Absolute 0.0 - 0.5 10*3/uL 0.5
Basophils Absolute 0.0 - 0.2 10*3/uL 0.1

Dr. Google is telling me this looks like anemia plus potentially heart disease.....Very scared. Thanks for your support.
ETA: Just got more results. I don't understand what any of these things mean yet but just the numbers are scary. Just trying to get through the next second, minute, hour for now. My white blood counts and signs of infection (or cancer?) don't look great. I just had a bad respiratory infection in February and I'm wondering if there is something lingering....

[lyndacarol]

I've been taking your advice about B12 and exercise to heart since this all started and I'm trying to eat better. I just got all my test results back as the counts needed to be rechecked and haven't talked to my doctor yet. The results are available online.

So far, since my Tuesday visit, I've been prescribed (and have been taking)
1 weekly b12 shot
10000 uL D3, weekly
daily multivitamin
1 mcg folic acid, daily

Although I did not see the tests in your list, I assume that your doctor ordered nutrient testing before prescribing B12, folic acid and D3. Would you share the results of your serum B12 test, your folic acid test, and your 25-hydroxy vitamin D test?

Since vitamin B12 was deemed to be too low and in need of supplementation, please be aware that B12 shots given in the offices of doctors in the US are in the form of cyanocobalamin, which is not readily available to the body until the body decyanates it. Methylcobalamin or hydroxocobalamin are more readily bioavailable. Methylcobalamin can be purchased over-the-counter as sublingual (dissolved under the tongue) tablets.

It is important to establish your serum D3 level before supplementing – each person can react with more or less D3 in the blood than another person who takes the same dose. That is the reason it is useful to monitor the blood level with repeated tests. By the way, how many weeks will you be taking 10,000 IU of D3?

[reina]

I've been taking your advice about B12 and exercise to heart since this all started and I'm trying to eat better. I just got all my test results back as the counts needed to be rechecked and haven't talked to my doctor yet. The results are available online.

So far, since my Tuesday visit, I've been prescribed (and have been taking)
1 weekly b12 shot
10000 uL D3, weekly
daily multivitamin
1 mcg folic acid, daily

Although I did not see the tests in your list, I assume that your doctor ordered nutrient testing before prescribing B12, folic acid and D3. Would you share the results of your serum B12 test, your folic acid test, and your 25-hydroxy vitamin D test?

Since vitamin B12 was deemed to be too low and in need of supplementation, please be aware that B12 shots given in the offices of doctors in the US are in the form of cyanocobalamin, which is not readily available to the body until the body decyanates it. Methylcobalamin or hydroxocobalamin are more readily bioavailable. Methylcobalamin can be purchased over-the-counter as sublingual (dissolved under the tongue) tablets.

It is important to establish your serum D3 level before supplementing – each person can react with more or less D3 in the blood than another person who takes the same dose. That is the reason it is useful to monitor the blood level with repeated tests. By the way, how many weeks will you be taking 10,000 IU of D3?

Thank you for the advice on the B12. I'll be sure to get the methycobalamin at the drug store.

I completely blanked on the results of the nutrient testing.
Interestingly, my serum D3 seems NOT to have been tested since I have no results for that. They only prescribed 4 weeks of Vitamin D3 10,000 IU. I'm confused as to why that wasn't ordered.
Of the testing that was done, these were the results, low but normal by someone's standards:

Vitamin B-12 213 - 816 pg/mL 223
Folate 7.0 - 31.4 ng/mL 7.8


Thanks so much for your advice. Sending you well wishes.

[lyndacarol]

Interestingly, my serum D3 seems NOT to have been tested since I have no results for that. They only prescribed 4 weeks of Vitamin D3 10,000 IU. I'm confused as to why that wasn't ordered.
Of the testing that was done, these were the results, low but normal by someone's standards:

Vitamin B-12 213 - 816 pg/mL 223
Folate 7.0 - 31.4 ng/mL 7.8

I am with you, reina, when you say, "confused as to why that [serum D3] wasn't ordered." And yet, the doctor proceeded to prescribe 10,000 IU weekly for a month! I hope the doctor will monitor your level SOMEWHERE along the line.

If not, vitamin D (25-hydroxy D) testing is available through GrassrootsHealth, which is offering their test through March 31 for $48.75 (plus $5 shipping) – once you receive the test kit, it requires pricking a finger to obtain a few drops of blood which are put on the supplied blotter card and returned by mail. The test results are received within a week. http://www.grassrootshealth.net/march-2 ... cial-offer

As for your B-12 level of 223 pg/mL… Your lab's reference range of 213-816 is typical of most US labs'; however, many experts consider that US labs have set them too low.

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.

According to these authors, your B-12 level (of 223) falls in the gray zone. By the way, in Japan a B-12 level below 500 pg/mL is considered deficient and is treated as such. In my opinion, it would be worthwhile to discuss your low B-12 level with your doctor and possibly investigate the REASON it is low (especially with your history of a B-12 issue). Insufficient or deficient B-12 can cause neurological problems.

[reina]

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.

According to these authors, your B-12 level (of 223) falls in the gray zone. By the way, in Japan a B-12 level below 500 pg/mL is considered deficient and is treated as such. In my opinion, it would be worthwhile to discuss your low B-12 level with your doctor and possibly investigate the REASON it is low (especially with your history of a B-12 issue). Insufficient or deficient B-12 can cause neurological problems.[/quote]

LyndaCarol, thank you again for your guidance. I'm feeling very frustrated with my doctor and quite nervous. I got some more results. My Methylmalonic Acid came back 219 nmol/L with a normal range of 87 - 318 nmol/L. My doctor tells me that is a more sensitive test for B12 and indicates that I do not have a B12 deficiency. I am continuing to take B12 orally but she discontinued B12 shots. She did not test my homocysteine levels and I'm not as sure as she is that MMA levels are the definitive indicator that my B12 is sufficient.

In addition to my Vitamin D serum, she never tested my iron levels but believes I am "probably" iron deficient. Clearly I have to find another doctor.

My MRI is tomorrow. I'm trying hard to not be too nervous about the test or the results. The numbness and vertigo continue but I'm still trying to have good days. Sending positive thoughts to you all.

[lyndacarol]

In addition to my Vitamin D serum, she never tested my iron levels but believes I am "probably" iron deficient. Clearly I have to find another doctor.

My MRI is tomorrow. I'm trying hard to not be too nervous about the test or the results. The numbness and vertigo continue but I'm still trying to have good days. Sending positive thoughts to you all.

If your doctor believes that you are iron deficient, I can't understand why she wouldn't test your serum ferritin!

If you go to a new GP, I urge you to request a vitamin D test (a.k.a. 25-hydroxy D test).

You will be in my thoughts and prayers tomorrow as you undergo the MRI. It is relatively easy to deal with, as you probably know. With each MRI that I have had, I close my eyes before being rolled into "the tunnel" (and even tell the technician that I won't open them again until I am brought out!) and then I try to visualize every landmark, house, and turn in the road that I saw as a child going to my grandmother's.

[NHE]

LyndaCarol, thank you again for your guidance. I'm feeling very frustrated with my doctor and quite nervous. I got some more results. My Methylmalonic Acid came back 219 nmol/L with a normal range of 87 - 318 nmol/L. My doctor tells me that is a more sensitive test for B12 and indicates that I do not have a B12 deficiency. I am continuing to take B12 orally but she discontinued B12 shots. She did not test my homocysteine levels and I'm not as sure as she is that MMA levels are the definitive indicator that my B12 is sufficient.

Your B12 level at 223 pg/mL is quite low. It indicates a deficiency even though your MMA was not elevated. It's possible to have a false negative test result for MMA. For example, if you're on, or have recently been on, antibiotics, then your MMA can be normal despite having a low B12. Moreover, MMA is a product of a B12 reaction in the mitochondria which uses adenosylcobalamin. The other form, methylcobalamin, could still be low. If you're experiencing neurological symptoms, then it's best to have your B12 between 600-1000 pg/mL. I would recommend that you keep supplementing with a good sublingual methylcobalamin form of B12 in the range of 1000-2500 µg/day.

Nearly 2 years ago, I was in a similar situation, my B12 was at the bottom of the lab's range at 247 pg/mL and my MMA was normal. The nurse said "well, you're still within the range." However, my doctor at the hospital said that I was "definitely deficient." The neurologist I later saw refused to consider that I was B12 deficient based on my MMA. However, taking B12 at that time when I was deficient was like turning the lights on inside my brain (this occurred day after day for several months). I think any reasonable person experiencing this would conclude that a deficiency does indeed exist.

Note that B12 is not an instant fix. B12 deficiency can cause demyelination in both the brain and spinal cord. Taking B12 should help stop this B12 deficiency induced demyelination, but the damage still exists and it takes time for the body to heal.

[lyndacarol]

I wonder how you are doing with your MRI today.

NHE has given you valuable information about B12: "Your B12 level at 223 pg/mL is quite low" and all the rest of his post.

In reading through this thread, I was reminded of your statement:

(To be fair to him, I guess, I am obese at 200lbs but fully mobile and have no further chronic health complaints).

Humans store vitamin D in fat; but we are not made to carry excessive fat. In my opinion, it is important for you to request a vitamin D3 test (the 25-hydroxy D test) because of information in the book, The Vitamin D Solution by Michael F. Holick, PhD, MD (maybe available at your library):

(On page 230)… overweight people don't have higher levels of 25-vitamin D due to their higher fat content. They have lower levels because the excess fat absorbs and holds onto the vitamin D so that it cannot be used for bone building and cellular health. Unlike a normal-weight person, whose fat is continually being recycled so the vitamin D can be released, those with relatively immobile fat stores cannot access their vitamin D, which is literally locked up in their adipose tissue.…

(On page 231)… Obese people need two to three times more vitamin D a day than those of normal weight, so I advise such patients to take between 3000 and 6000 IU of vitamin D a day. This does not entail any risk of toxicity and may even ultimately help a person to lose weight, given vitamin D's positive impact on insulin metabolism.

Vitamin D expert Bruce W. Hollis, PhD (at Medical University of South Carolina) holds the opinion that vitamin D should be administered daily because of the rapid half-life of the various forms.