New here, not yet diagnosed

[Cherry]

Hi All,

I' Sarah or Cherry, 29, female and I'm new here and not yet diagnosed, actually having difficulty getting drs to listen, I've been told it's all in my head, accused of being overly dramatic, hysterical, even borderline for asking drs to look into things.

I've been experiencing unexplained symptoms for about 3 years now that have gotten progressively worse. At first I was having trouble with numbness in my right leg and some balance issues, like vertigo. I'd been getting headaches and blurry vision for around 3 years prior but it was put down to migraines.

In the last year I've experience more profound numbness, mostly on my right side, and tremors, and I've had a couple of collapses. Fatigue is a huge issue (drs say it's CFS but I'm not so sure) some days I can't even get out of bed. I get terrible pain down my back, and in my legs. In the last 6 months I've been having bladder control issues (that's been a major lifestyle changer!) and trouble breathing (a constricting feeling around my chest). I'm a lifelong sufferer of asthma so the breathing has been put down to that and/or panic as my asthma has gotten a lot worse. And memory issues, which are by far the hardest for me (I've always had a photographic memory and near perfect recall) I struggle with names, words, spelling and even misspeak - thinking one thing but saying a wrong word usually unrelated - it's really distressing.

Hopefully things will improve soon as I'm seeing a new Dr, but time will tell, I've been tested for just about everything you can think of, but because my tests were mostly normal, my old dr just thought I was exaggerating in the hope of getting pain killers (despite never asking for anything)

It's frustrating and scary feeling my body gradually betraying me, with drs saying that it's all in my head. I joined here after story boarding my symptoms with a good friend and ruling out what the drs have and basically seeing what could be causing my issues.

I hope I'm wrong, but part of me would like to know, even if it's bad news so I can get to treating it and try to have something of a normal life.

I guess that's all for now, hopefully I can find some answers. I'm in Australia too, if that helps, specifically, Adelaide. I noticed there is an undisguised section so I'll post this in there too so admins delete if it's not right.

C

[jimmylegs]

hi and welcome sarah

reading your story, i'm wondering if you've had any referrals to any preventive specialists of any kind, in terms of diet, nutrition, lifestyle etc?

have you, the docs, or anyone else had a look at whether you're getting all your essential nutrients properly balanced against your requirements/activity levels, and that you're not potentially suffering from any absorption/retention issues due to antinutrient/competition factors such as prescription drugs, alternative supplements, or other lifestyle factors?

if not, might be worth doing a bit of work to rule out some of the usual suspect nutrient issues that are typically a factor with the average ms patient.

when i was diagnosed, i already knew i had chronic vit b12 problems (a b12 level test is normally used to rule out an ms diagnosis) and no amount of supplementing helped.

since the early days, i've found problems with and dealt with macronutrient issues such as protein and omega 3 fatty acids, and micronutrient problems including iron, vit d3, uric acid, zinc, magnesium, and more. in every case, levels were too low.

it's been a complicated learning curve but i've managed to improve emotional health, vision, pain levels, fatigue, and breathing, as well as sensory and cognitive function.

if this kind of approach sounds like it could be a feasible line of investigation in your case, access to the right kind of health professional can be key - if so, i hope you have some reasonable local options! and if not, there are loads of people here ready to help. the work can be done quite independently if needed. hope that helps some

[NHE]

Welcome to ThisIsMS. You mentioned that you've had a bunch of tests done. Can you be more specific as to what you've had checked? Also note that sometimes it's good to know the actual test results as opposed to being told that they're normal. For example, some tests can be in the high end of normal, such as the MCV in the complete blood count (CBC) and be problematic and other tests can be in the low end of normal, such as vitamin B12, and be problematic though you still get labeled as normal. It would also be good to know what type of doctors you've seen. For example, have you seen a neurologist? Be careful though. Some doctors, such as MS specialists, attribute every symptom you have to the condition they specialize in even though it can be due to something completely unrelated.

[Scott1]

Hi,

I'm in Melbourne so I understand the sort of people you have probably seen. You said you had been tested for everything. Were you lucky enough to be given a list of what they did or a copy of the results? doubt they tested for much but made a big noise about what they did. Half the tests I ever had made no sense at all when you thought about them and many that were abnormal were ignored. A lot seems to be about saying they did it not what the testing implied.
What viruses were tested? What did they say your uric acid level was? What were your amino acid readings? What did our blood sugars show? Were your lymphocytes normal? What scans did they conduct? etc.
Have you been checked for Ross river virus as its found around Adelaide?

Regards

[Cherry]

Hi JimmyLegs,

I've had all my vitamin levels etc checked and things look ok, nutrition wise I seem to be ok, in fact from the tests done I appear to be pretty good. Lifestyle factors, yeah I'm heavy, though I eat well, excersize is difficult so I generally eat less and better and excersize when I can.

S

[Cherry]

Tests so far and results

CRP 24 mg/L
CK 72 U/L
B12 181 pmol/L
Ferritin 128 ug/L
TSH 2.19 mIU/L
ANA negative
CMV IgG positive
CMV IgM negative
HIV non reactive
Sodium 138 mmol/L
Potassium 3.9 mmol/L
Chloride 99 mmol/L
Bicarbonate 28 mmol/L
Urea 3.7 mmol/L
Creatinine 59 umol/L
eGFR >90 mL/min/1.73
Uric acid 0.32 mmol/L
Glucose 5.0 mmol/L
Cholesterol 5.7 mmol/L
Phosphate 1.19 mmol/L
Calcium 2.25 mmol/L
Calcium (corr) 2.21 mmol/L
Total protein 67 g/L
Albumin 42 g/L
Globulin 25 g/L
Total Bilirubin 4 umol/L
GGT 23 U/L
ALP 90 U/L
ALT 12 U/L
AST 9 U/L
LDH 168 U/L
Hb 130 g/L
MCV 84 fl
RDW 13.5 %
PCV 0.38
RCC 4.58 10^12/L
Plt 265 10^9/L
MPV 6.4 fL
WCC 8.1 10^9/L
Neutrophils 5.8 10^9/L
Lymphocytes 1.6 10^9/L
Monocytes 0.6 10^9/L
Eosinophils 0.2 10^9/L
Basophils 0.0 10^9/L

Urine
Leucocytes 10 x10^6L (R 0-10)
Erythrocytes 0 x10^6L (R 0-10)
Squamous Epith 0 x10^6L
Trans. Epith 0 x10^6L
Casts/Crystals not detected
pH 6
Protein negative
Glucose negative
Blood negative

PCR (nasal)
RSV PCR not detected
Rhinovirus PCR not detected
Human metapneumovirus not detected

Influenza PCR
Influenza A RNA not detected
Influenza B RNA not detected
Para-Influenza 1 RNA not detected
Para-Influenza 2 RNA not detected
Para-Influenza 3 RNA not detected

Epstein Barr Virus VCA IgG positive
Epstein Barr Virus VCA IgM negative
EBNA IgG positive

Full STI Panel (for good measure) all negative

They Did a head CT but no MRI and no spinal.
I had a spinal tap in April to check for Pneumoccocus as I had a bad reaction to pneumovax (12 days in hospital) but they only looked for Pneumoccocus.

I've a also had full respiratory work up and heart, I don't have those results, but I was told they were within norms. I also had 2 sleep studies, both showed an AHI of 1.7

It took a heck of a lot of trouble to get the tests I have had run done, but if appreciate any ideas on tests or things to check/rule out

[jimmylegs]

hi again levels testing can be a misleadingly reassuring and unfortunate pitfall with this stuff. most ms patient levels are 'normal' per se, but generally low normal (vs high normal which you'd tend to see in healthier folks).

related 2014 forum poll results:

http://www.thisisms.com/forum/general-d ... ml#p221256

http://www.thisisms.com/forum/general-d ... ml#p221264

[Cherry]

Thanks I'll check that out, many are on the low side but first thing I need is a dr to listen

[jimmylegs]

absolutely - a referral to a nutritionally-oriented specialist could be important. according to research, docs get on average 23-24 hrs total of nutrition ed in med school (range 2hrs to 70hrs so with an average in the mid 20s you know that 70 is an outlier very much on the high side)

re your b12 at 181 pmol/L that's definitely on the dangerously low side. for serum b12 i aim for 500 pmol/L (although 370 pmol/L should do the trick and equates to 500 pg/ml which is a bit of a speculative target i've used in spite of its not necessarily seen too often in medical literature)

ferritin looks good, even a bit high.

uric acid also on the high side (you're at 320, 290-300 is best, 360 and up is headed for gout - my ua levels used to sit at the ms average of 194 but sometimes sank to 188 :S )

i'm surprised they haven't looked at vit d3, but if you can a serum 25hydroxyvitamind3 test could be useful. (aim for at least 100nmol/l AS LONG AS your magnesium status and mineral status in general is good)

positive on the EBV igG hints at some work needed on the immune system, would be good if you could evaluate your daily intakes of selenium and zinc.

magnesium status has links to d3 utilization and immune function as well - we might be able to get a sense of mag status from your CRP number but i can't do that off the top of my head so will have to look into it a bit more before providing anything more specific than the fact of the connection

[jimmylegs]

WOW are you sure that's not 2.4 mg/L CRP??? i'm looking at a study where the elevated CRP group have levels >/= 3.0 mg/L...

from table 3 at http://www.mccordresearch.com/sites/def ... rotein.pdf

less than 50% of daily mag requirement.....= median serum CRP 2.09 mg/L
50-74% of daily mag requirement..............= median serum CRP 1.89 mg/L
75-99% of daily mag requirement..............= median serum CRP 1.94 mg/L
100% or more of daily mag requirement.....= median serum CRP 1.70 mg/L (looks like your target serum CRP level..)

with high CRP (even counting 2.4 mg/L as high given the above) looks like it could make a lot of sense to look at your dietary mag intake (which if low will be having consequences for your vit d3 status and associated immune function issues)

serum mag should be well into the upper half of the normal range (which is generally 0.70-1.10 mmol/L.. keep that in mind if you're aiming for 100 nmol/L vit d3 - it should happen much faster if you have your magnesium status sorted out first)

[lyndacarol]

Welcome to ThisIsMS, Sarah (Cherry). First of all, I am sure that your symptoms are NOT "all in your head."

I have no medical background, but I know that jimmylegs is correct when she says that your B12 level is "definitely on the dangerously low side."

Your B12 level at 181 pmol/L equals 245.3 pg/mL (per page 205, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O.). These authors recommend that the B12 level should be more than 550 pg/mL


Depending on the standard range set at your lab, your Mean Corpuscular Volume (MCV 84 fl) may be on the high end and could indicate enlarged red blood cells (macrocytosis), which can be a sign of long-standing B12 deficiency.

The first symptom that you mention ("numbness in the right leg") is also called peripheral neuropathy, which also includes pain or tingling in extremities, and it is common to many conditions – among them, B12 deficiency and celiac disease. Your low vitamin B12 level could be the result of celiac disease. It might be a good idea to discuss possible screening with your doctor (maybe starting by testing the following nutrient levels that are known to be deficient with celiac disease).

List of common nutrient deficiencies with celiac disease:
Minerals........ Vitamins
Calcium......... Vitamins A, D, E, K
Copper ......... Folic Acid
Iron ..............Vitamin B, 1, 2, 3, 6, 9, 12
Magnesium ..... Vitamin C
Phosphorus
Potassium
Selenium
Zinc

http://www.csaceliacs.info/symptoms_of_ ... isease.jsp

There is a well-established test protocol for celiac disease: A physician takes a set of blood tests during a period when the patient has not been on a gluten-free diet; then, depending on the results of the test, a physician might proceed with an upper endoscopy, long known as the gold standard for a celiac diagnosis.

The blood tests must be taken when the patient has not been on a gluten-free diet; the tests measure the patient's reaction (or lack of reaction) to gluten in the diet. (The longer a patient has been gluten-free, the less chance there is of measuring anything and getting useful results.)

Some physicians might want to take only one or two blood tests, but the Celiac Disease Center at Columbia University recommends the following set to maximize the chance of getting accurate results:
Anti-gliadin antibodies (AGA) both IgA and IgG
Anti-endomysial antibodies (EMA) - IgA
Anti-tissue transglutaminase antibodies (tTG) - IgA
Total IgA level

Confirmation of the diagnosis is done with an endoscopic tissue sample (using a tiny camera to look at the lining of the intestines)

Intestinal Permeability Assessment is another possibility - This test is administered by a healthcare professional, and it involves drinking a liquid solution of mannitol and lactulose. Urine is then collected over a 6-hour period. If high levels of both molecules are found, it indicates a leaky gut condition. If low levels of both molecules are found, it indicates general mal-absorption of all nutrients.

Diagnosing CD by Video Capsule Endoscopy (VCE) may be a possible alternative to tissue sampling:
http://celiac.org/blog/2012/11/06/diagn ... diagnosis/

Digestive symptoms, such as vomiting, abdominal bloating, weight loss, are most common in children; adults with celiac disease are more likely to experience fatigue, bone or joint pain, or other non-digestive symptoms.

Untreated celiac disease has been linked to nerve-related conditions.

In my opinion, these possibilities should be investigated.

[Cherry]

I'll look into b12 with my new doc tomorrow, and see about the other recommended tests. I know I'm not celiac, had that tested a while ago and again recently, but if they're a testing, why not check again.

CRP was definitely 24. I was told I must be fighting an infection or something, the dr used this to justify CFS/PVFS.

I take a multivitamin which has selenium and zinc in it but I will check if there is a better one to be on

[Cherry]

Also any experience with a nutritionally oriented specialist would be great, I'd like to know what I'm looking for, top result in a google search locally was core nutrition

[lyndacarol]

I'll look into b12 with my new doc tomorrow, and see about the other recommended tests. I know I'm not celiac, had that tested a while ago and again recently, but if they're a testing, why not check again.

CRP was definitely 24. I was told I must be fighting an infection or something, the dr used this to justify CFS/PVFS.

I take a multivitamin which has selenium and zinc in it but I will check if there is a better one to be on

If your new doctor will screen for a possible B12 deficiency, please be aware that the "serum B12" test alone is not adequate to discover a deficiency. If the newer, more reliable HoloTc test is not yet available in your area and the doctor must order the outdated serum B12 test (which measures the total B12 in the bloodstream – and not just the portion which can reach and be used in the cells), he should also order the RBC folate test, the serum homocysteine test, and a methylmalonic acid test (either the serum or urinary form). By the way, these tests are inexpensive relative to neurological testing for MS. They can be ordered by any physician – GP, neurologist, hematologist, nutritionist, etc.

Also, taking vitamin B supplements before testing will skew the results. (I suspect your multivitamin may have B vitamins in it. You should consider discontinuing supplementation for a couple weeks before any testing.)

B12 deficiency can develop in any person at any age; likewise for celiac disease. I like your attitude: if celiac testing was done a while ago, "why not check again." At the very least, your doctor could screen for the nutrient deficiencies and antibodies common with celiac disease.

[jimmylegs]

ah ha re CRP x infection, esp given EBV results.. interesting:

Acute cerebellar ataxia due to Epstein–Barr virus
http://pn.bmj.com/content/12/4/238.extract
(not the best link ever and not the best paper ever, just being a case report, but still worth a look)

re selenium and zinc, what forms, what dose per pill, and how many of the multivitamin pills do you take per day to get the dose specified on the label? what brand of multi? could be fine but no harm checking

i wish i could tell you more re finding a good nutrition person but i guess i'd say figure out how nutrition counselling is regulated where you are, if there is a related professional association or not, that kind of thing. that said, many dietitians will challenge serum levels as a means of assessing status, regardless of serum levels being all over the research so, personally i take it all with a grain of salt and listen to the research!