Thoughts on my symptoms

[mcrow24]

Not expecting a diagnosis here, but just if it sounds like things MS would cause:

I'm male and 37 years old.

Pain in the face, right side only. Mostly in the cheek area, sometimes in the jaw. It's like a charlie horse but sometimes burns. I thought it was a tooth issue at first but the dentist says everything looks OK. Tried brux gaurd just to make sure it wasn't a jaw clenching issue, but that hasn't helped. The pain comes and goes, it started a little over a year ago, typically lasts for a week or two and then nothing for a month and it starts happening again. This time it has been going on for a month.

Fatigue: Sometimes I feel great, other times I'm barely able to function. Most of the time I have some moderate fatigue that I can deal with and go to work with but isn't fun.

Tingling/stabbing pains in hands/feet, sometimes mild numbness.

Left foot falls asleep a lot for no apparent reason.

Headaches. Anywhere from mild to moderate headache most days. Mostly on the same side as the face pain.

Conginitive issues: Memory is bad, I don't forget where I am or to pick up my daughter from school or any of the major stuff but I spend a lot of time looking for things I just set down, don't remember conversations at times or don't remember things I'm supposed to do. General brain fog.

Pain in my right eye (same side as the face pain)

I've had several stints of pain in my neck/shoulder on the left side that shoots down the left side of my back as well. Sometimes it lasts couple weeks at a time. When that happnes lifting my arm makes it a little numb but sometimes painful.

I had an episode of pain in my calf that lasted about two weeks, thought I was getting a blood clot but ended up going away just before I was going to the doctor about it.

As you can see, it is a lot of odds and ends but typically most of these things last about two weeks and then goes away, sometimes more the one happens at the same time.

Now for the last month I've been having tingling, pain in the limbs, headaches, and face pain most days, and fatigue to varying degrees. So, it seems to be lasting longer this time.

I finally went to the doctor last week and she said that she thinks I have Trigeminal Neuralgia but the symptoms in the limbs concerned her a bit so she said I should see an neurologist.

Thanks for your support.

[jimmylegs]

hey there, welcome to the forum quick question - how's your diet and lifestyle typically?

[mcrow24]

hey there, welcome to the forum quick question - how's your diet and lifestyle typically?

Diet is hit or miss, though I do follow strict gluten free because of my Celiac disease. I've been maintaining weight.

I can't eat most baked goods and a lot of sweets in general due to gluten. I have been tested for diabetes as recently as may (during the time some of these symptoms were happening).

[jimmylegs]

ah ok. with celiac nutrient absorption challenges in the mix i would not really be surprised if you ended up with a similar array of nutrient depletion issues to those seen in ms - and along with the depletion, the symptoms.

gluten free is a good start in terms of minimizing anti-nutrient intake, but once you get past that, hit and miss won't be likely to do much for you in terms ensuring high nutrient density in the rest of your diet.

i think there should be some useful info available here, hit and miss or otherwise.. what would you say are the top ten foods and drinks you consume most often?

[mcrow24]

ah ok. with celiac nutrient absorption challenges in the mix i would not really be surprised if you ended up with a similar array of nutrient depletion issues to those seen in ms - and along with the depletion, the symptoms.

gluten free is a good start in terms of minimizing anti-nutrient intake, but once you get past that, hit and miss won't be likely to do much for you in terms ensuring high nutrient density in the rest of your diet.

i think there should be some useful info available here, hit and miss or otherwise.. what would you say are the top ten foods and drinks you consume most often?

I don't think it will be a nutrient absorbtion issue. I was absorbing nutrients OK even as an untreated Celiac, at least according to the labs I've had done. I think the last time I had them done was backin may or june, so I was already having these symtoms, just didn't last a month. I take vitamins and a 5k units of vitamin D every day as well.

[mcrow24]

I just sent an email to my Celiac Specialist to see what he has to say as well.

[mcrow24]

Talked to my Celiac specialist, he's going to order labs to test for vitamins/minerals...ect.

Also going to do the Celiac antibodies, to make sure that they are improving.

However, he says given that other than vitamin D I have not had much issue in the past in absorbing nutrients that he's pretty sure it's not the problem. He said it sounds like a neurological issue not related to the celiac and it is best to keep the appointment with the neurologist.

[jimmylegs]

excellent. fyi, lab tests are extremely poor at flagging nutrient deficiencies. research has clearly identified treatable nutrient deficiency occurring within established 'normal' (ie bell curve) ranges. ms patients have low to mid ranges nutrient levels, while healthy controls have high normal levels.

i would strongly recommend that you know in advance which specific tests are being ordered so that you can make sure you're hitting nutrients of concern for neurological as well as GI health.

i would also strongly recommend that you get your own copy of the results for each test, because they are most likely going to be 'normal' - you'll want to be sure it's not low or mid normal. for one example a patient here ordered a serum zinc test once (you'll want that test on your list by the way). she was told her level was fine. when she pursued the number, her result was 10.083 umol/L. her lab was using the range 10-20 umol/L as 'normal'. my local lab uses 11.5-18.5 umol/L, so if she'd gone there she would have been deficient. it's really arbitrary.

possibly useful reading
http://www.thisisms.com/forum/general-d ... ml#p221256
http://www.thisisms.com/forum/general-d ... ml#p221264

[lyndacarol]

Welcome to ThisIsMS, mcrow24.

Since my current focus is on possible vitamin B12 deficiencies in either the blood or the tissues, I hope one of your doctors has ordered the initial tests to rule out that possibility. Your celiac disease could have interfered with B12 absorption for years, during which time B12 would have been supplied by the large amount stored in the liver (until the liver was depleted). If celiac damage is now repaired, you may not have refilled the deficit – methyl B12 injections may be necessary. Bear in mind that the standard ranges are established locally at labs and that many experts consider that the ranges are outdated and set too low in the US.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. 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.

As jimmylegs does, I also urge every patient to request and keep a file of his own results. Compare your B12 test results to those recommended by the authors.

A vitamin B12 deficiency can cause neurological symptoms. All the symptoms you listed are consistent with a B12 deficiency.

[mcrow24]

excellent. fyi, lab tests are extremely poor at flagging nutrient deficiencies. research has clearly identified treatable nutrient deficiency occurring within established 'normal' (ie bell curve) ranges. ms patients have low to mid ranges nutrient levels, while healthy controls have high normal levels.

i would strongly recommend that you know in advance which specific tests are being ordered so that you can make sure you're hitting nutrients of concern for neurological as well as GI health.

i would also strongly recommend that you get your own copy of the results for each test, because they are most likely going to be 'normal' - you'll want to be sure it's not low or mid normal. for one example a patient here ordered a serum zinc test once (you'll want that test on your list by the way). she was told her level was fine. when she pursued the number, her result was 10.083 umol/L. her lab was using the range 10-20 umol/L as 'normal'. my local lab uses 11.5-18.5 umol/L, so if she'd gone there she would have been deficient. it's really arbitrary.

possibly useful reading
http://www.thisisms.com/forum/general-d ... ml#p221256
http://www.thisisms.com/forum/general-d ... ml#p221264

My last set of labs:

Hemoglobin 15.1 g/dl 13.5-17.5
Hematocrit 41.5 % 37.0-53.0
MCV 85 fl 80-100
MCHC 36.4 g/dl 32.0-36.0 H
MCH 30.9 pg 26.0-34.0
RDW 12.1 % 11.5-15.5
Platelets 307 K/uL 140-440
Neutrophils 62 % 42-72
Lymphs 24 % 20-44
Monocytes 7 % 0-11
Eos 6 % 0-7
Basos 1 % 0-3
Neutrophils (Absolute) 4.4 K/uL 1.7-7.0
Lymphs (Absolute) 1.7 K/uL 0.9-2.9
Monocytes(Absolute) 0.5 K/uL 0.0-0.9
Eos (Absolute) 0.4 K/uL 0. 0-0.5
Basos (Absolute) 0.0 K/uL 0.0-0.3
RBC 4.88 M/uL 4.30-5.90
WBC 7.0 K/uL 4.5-11.0
Vitamin B12 798 pg/ml 211-911
Iron Bind.Cap.(TIBC) 310 mg/dl 250-450
Iron Saturation 39 % 20-55
Iron, Serum 120 ug/dL 50-175
UIBC 190 ug/dl 150-375
FOL 14.9 ng/ml >5.4
Ferritin, Serum 212 ng/ml 8-388
Magnesium, Serum 1.8 mg/dl 1.4-2.5
ANGAP 13.60 5.00-18.00
BUN 13 mg/dl 5-22
BUN/Creatinine Ratio 10.83 10.00-20.00
Calcium, Serum 9.4 mg/dl 8.5-10.1
Carbon Dioxide, Total 30 mmol/L 21-32
Chloride, Serum 101 mmol/L 98-107
Creatinine, Serum 1.20 mg/dl 0.60-1.30
eGFR If Africn Am > 60 > 60
eGFR If NonAfricn Am > 60 > 60
Glucose, Serum 111 mg/dl 74-100 H
Potassium, Serum 4.5 mmol/L 3.5-5.1
Sodium, Serum 140 mmol/L 136-145
VITAMIN D, 25-HYDROXY 18.4 NG/ML 30.0-100.0


Most everything on the high end of normal, except Vitamin D but I was on 50k units per week for 8 weeks since then and 5k units per day after that. I get full results for all of my labs, plus I'm a lab tech so I know what should be ordered and what's normal and what's not.

These are from may, before I went gluten free. I take 36mcg of b12 a day as well

[mcrow24]

Welcome to ThisIsMS, mcrow24.

Since my current focus is on possible vitamin B12 deficiencies in either the blood or the tissues, I hope one of your doctors has ordered the initial tests to rule out that possibility. Your celiac disease could have interfered with B12 absorption for years, during which time B12 would have been supplied by the large amount stored in the liver (until the liver was depleted). If celiac damage is now repaired, you may not have refilled the deficit – methyl B12 injections may be necessary. Bear in mind that the standard ranges are established locally at labs and that many experts consider that the ranges are outdated and set too low in the US.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Dr. 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.

As jimmylegs does, I also urge every patient to request and keep a file of his own results. Compare your B12 test results to those recommended by the authors.

A vitamin B12 deficiency can cause neurological symptoms. All the symptoms you listed are consistent with a B12 deficiency.

My last b12 while an untreated celiac was about 800 with ranges being 200-900, so I'm thinking that it is OK. Not sure that mine would drop from 800 to being low in ~5 months.

[lyndacarol]

The serum B12 level of 798 pg/mL does appear to be good. (If you had been taking a B12 supplement before testing, the results could be skewed. I'm sure, as a lab tech, you were not.) The authors, Pacholok and Stuart, recommend that a person with neurological symptoms should attain a serum B12 level of 1000 pg/mL.

A serum homocysteine test and a serum (or a urinary test considered more accurate by many) methylmalonic acid test can indicate a B12 deficiency if the results are high. The authors also suggest the HoloTranscobalamin test (HoloTc).

[lyndacarol]

My last b12 while an untreated celiac was about 800 with ranges being 200-900, so I'm thinking that it is OK. Not sure that mine would drop from 800 to being low in ~5 months.

In general, a person's liver can supply B12 for up to about seven years until a deficiency caused for any reason would appear.

[jimmylegs]

great that you have results on hand, and that you have a few nutrient levels in the mix.

your serum mag was low when that test was run. best to aim for at least 2.3 mg/dl.

serum magnesium is one of the tests for which deficiency has been identified within the normal range. 2.3 mg/dl is a level that has been proposed in research as a more appropriate lower cutoff for serum mag.

some researchers suggest that serum magnesium is a problematic test because it can be normal, while rbc magnesium is low. in fact serum mag is a very useful test as long as you understand that the bottom end of the range includes deficiency, while healthy control levels are high normal (2.3-2.7 mg/dl matches healthy controls in the literature).

if you boost that low serum magnesium level, i would expect you to see an improvement in serum d3 synthesis from sunlight, as well as absorption from diet and supplements. we've had lots of discussion on mineral interactions with vit d3 here on the forum. if you're interested in reading about it let me know and i'll post a relevant link to get you started.

magnesium is involved in hundreds of interactions in the body and depletion can manifest in a wide variety of ways. still, the list of magnesium deficiency symptoms will likely look familiar:

"Early signs of magnesium deficiency include loss of appetite, nausea, vomiting, fatigue, and weakness. As magnesium deficiency worsens, numbness, tingling, muscle contractions and cramps, seizures, personality changes, abnormal heart rhythms, and coronary spasms can occur [1,2]. "

i have definitely experienced magnesium deficiency but never associated nausea or vomiting. i have experienced fatigue, weakness, numbness, tingling, muscle contractions and cramps, irritability, and abnormal heart rhythms, and muscular spasms.

some of the potential symptoms that aren't listed above specifically include headaches, PMS, hiccups, and dysphagia. these all fall under the spasm/cramp heading. unfortunately, the breadth of that spasm/cramp umbrella term effectively masks how common magnesium issues can actually be.

it would probably be valuable to boost magnesium rich foods in diet and try to achieve 600mg per day of intake. mineral water is a good idea.

here is a list of healthy magnesium dense foods, with mgs of elemental magnesium per serving. the top dozen or so are good.

http://www.whfoods.com/genpage.php?tnam ... #foodchart

ensure variety when choosing from the high mag foods list. nuts and seeds might be easier than cooked greens, but they are also very high in phosphorus by comparison, and excess P is not good for your magnesium status.

magnesium supplements can help you achieve that 600 target. mag supps are not all created equal. look for magnesium glycinate for best absorption.

if magnesium is in fact connected to your symptoms, you should feel a difference almost immediately. within a week.

if you have been taking vit d3 supplements to help address your low levels, that can drive magnesium down and lead to some of the symptoms you describe. if you are still taking d3 and plan to continue, make sure that you take some supplemental magnesium at the same time as the d3, and another dose of supplemental mag at a completely different time of day. this program will allow your body to utilize the magnesium for its other essential purposes not associated with vit d3.

[jimmylegs]

well i just went and converted your 1.8 to mmol/L since that's my comfort units.. and it's only 0.74 mmol/L which is really pretty bad very bad.

so then i thought i would convert the bottom end of your lab's range, since it's even lower than your typical 1.5-2.5 range when using mg/dl. and it comes out to 1.4 x 0.411 = 0.58 mmol/L. classic and terrible all at once

i have ranges from two local labs - one uses 0.70-1.10 mmol/L and the other uses 0.65-1.05 mmol/L. they're both ranges which include deficiency levels, but using 1.5 mg/dL (which converts to 0.62 mmol/L) is worse still.

i think this is the first time i've seen a lab with a serum mg range going down below 0.6 mmol/L at the lower end. scary!