17 years - no diagnosis

[NytViolet]

At age 25, I had a sudden onset of severe fatigue which lasted 3 years. Gradually, it improved and my MD said I'd had an acute EBV infection and CFS. Thrilled to be in remission at age 29, I proceeded to engage in a strenuous exercise program to lose the 35 lbs I'd gained. I worked my way up to a 3 mile daily run, weightlifting and tennis on weekends. By age 31, I'd shrunk from a size 16 to a 6 (I'm 5'8") and felt / looked wonderful. Then it happened. One day I was about a mike into my run and my legs felt heavy, and I was exhausted. I assumed I must be getting the flu (it was Fall 1995). Within the next few weeks (in rapid succession) I developed the inability to fully empty my bladder -- I was at work and used to restroom as usual. Thinking my bladder was empty, I was horrified to find that my pants were soaked with urine that I'd failed to void. Around the sane time, I noticed that it was nearly impossible to reach orgasm, and if I did, it was weak and not worth the effort. A neuro appointment was arranged, and my clinical exam was normal as was a full MRI of brain and spinal cord...I was promptly placed on antidepressants. By 2000, I began having ocular migraines (prism-type blurring in one eye that would last about 30 minutes followed by a dull headache). By 2004, I was having mild trouble swallowing, and learned to eat very carefully and slowly. Because if the intense burning in my feet and muscle twitches combined with joint pains, I was referred to a rheumatologist in 2006 who said "I think you have fibromyalgia". I'm now 49 years old, struggling to work full time and my mornings are predictably awful with cognitive issues, numb hands, burning feet, and fleeting weakness/ heaviness in an arm or leg-- I am starting to wonder if the clear MRI has misled me? I'm not hoping for MS, but a dx would at least provide answers and prevent possible further damage! Please...am I the only person who's been undiagnosed for this long? I have an HMO an I only see the PA, so I worry that she'll simply order more blood work (they've taken liters of it). Advice appreciated. Blessings to you all.

[NytViolet]

How rude of me...I'm new here, and am 49, married and reside in Central Florida. I'm still working as a Social Media Admin for a communications company. I'm hoping this board will yield some answers. Best Regards

[ElliotB]

Although my diagnosis came fairly quickly from the onset of my 1st significant attack, I left nothing to chance and made changes to my diet, exercise regimen, supplements and lifestyle with the assumption that I had MS. If you have not already done so, that would be my suggestion. There is a lot of information on this site that can assist you with each of these areas.

Just because you are in a HMO, does not mean you cannot see a neurologist. Insist that they give you a referral to someone that specializes in MS.

I live in Florida as well and am sensitive to the heat. I wear a cooling vest as needed and do a lot of swimming, which allows me to get in a really good workout and stay comfortable temperature wise at the same time.

Good luck!

[jimmylegs]

hi and welcome NV

i used to have terrible fatigue on and off as well, and my mother used to wonder if i had had undxd mono. in hindsight, as a teen into ski racing and gymnastics, who went vegetarian in my early twenties, the more reasonable candidate would have been one or more common nutritional deficiencies, such as iron.

a family connection of mine had chronic EBV for years and after flying out to take the nutritional concerns in hand on two separate occasions, we finally got the tests to come back negative for EBV infection, and the food allergies that had been in the picture at the lab cleared up as well.

i'm dismayed to report that this particular young person continues to have issues with iron, and has embarked on an exercise program while failing to meet dietary or supplemental requirements for essential nutrients. while meals are healthy on the face of things, the health complaints are starting to roll in once more.

couple years ago a co-worker of mine, also in her 20s, started to feel really low and she had bloodwork done of which i still have a copy. all levels 'normal' but suboptimal, so we started a diet and supplement program and the next time we had a chance to discuss, everything had turned around.

with that as background, i've noticed regular appearances here from folks with strenuous activity in their daily lives. i've gotten in the habit of linking new visitors to previous related discussion
http://www.thisisms.com/forum/search.ph ... mit=Search

meds can have a depleting impact as well, including antidepressants, (as can oral contraceptives actually, if those are in the picture ... example of OCA impacts on nutrient status http://www.thisisms.com/forum/natural-a ... tml#p50110 )

i too have had difficulty swallowing, and thanks to a life-saving pharmacist was turned on to magnesium as one of the most instantly noticeably effective supplements i have ever taken. (by instant i mean a couple days to be certain of the difference at first, and over time once i got to know what to expect, i could feel it take effect in an hour). as an essential nutrient that is recognized by the WHO as an international problem, it affects WAY more than ability to swallow and interestingly, is typically low in fibro patients as well. low mag affects ability to absorb and utilize d3 properly, and so can be associated with joint pain also.
i am a huge fan of bloodwork, and am curious which specific serum nutrient tests might have been run in your case? do you have your own copy of results on file?
if not, there are a few good tests you could ask for and in some cases reasonable serum targets (within the normal range, but high normal not low or mid normal) to aim for. boiled down to basics, here are a few numbers:
serum vitamin B12: aim for at least 370 pmol/L (500 pg/mL)
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL)
the link below gets into more detail.

failing more exciting tests, you might consider keeping a food/fluid/meds/supplements diary and look for essential nutrient content as well as potential challenges to absorption associated with food combinations, fluid intake and choices (eg preferred type of drinking water, amount of caffeinated beverages or alcohol (diuretics) consumed, etc), possible nutrient depleting influences of medication (doesn't have to be a prescription - could be as simple as antacids), etc.

pm me for more detail if you are interested.

[NytViolet]

I am exceedingly thankful to you both for your comments and suggestions. As I states, I'm 49 and have been dealing with symptoms that are slowly worsening for 17 years. I am educated, and have practically made a career out of studying diet, herbs, and vitamins. I also own a juicer and NUTRIBULLET to provide adequate nutrition through diet. But the fact remains: I am literally dragging myself through every, single day without a diagnosis!! Fibromyalgia (in my opinion) is a diagnosis given by lazy doctors who do not wish to truly evaluate a person. I guess I am asking if my situation sounds as if it could be MS. If I do not go into the doctor's office with my own suggestions in mind, I'll end up with a chest X-ray and a colonoscopy (I'm not kidding). Also, it seems like most the folks on here were dx'd rather quickly, so perhaps it's more complex than just one disease / syndrome. I dread even starting the whole investigative process over again...it is financially and psychologically draining. Thank you again for your information.

[NytViolet]

I neglected to add that I have tested (BOTH pos and neg) for ANA, RA, EBV and anemia. Our bodies are forever in flux, and I am a strong proponent of healing through natural means. But fibromyalgia is called the "million dollar disease", because of the extraordinary amounts if time and money invested in arriving at a diagnosis (which is really no dx at all). And to the person who lives in Florida, I'm sure you dread this time of year, as do I. I am fortunate that I have an office job, but since taking it, I've noticed a distinct increase in symptoms. I've gained 25 lbs, have developed high blood pressure and spend 9-10 hours daily under extreme stress. I hate sounding like a whiner (I know -- I do), but I often wonder how long I'll be able to wear this masque and pretend that I feel fine. Let's face it, no one wants or needs to hear your problems because everyone has their own. It's going to take a lot of courage, but I believe that during my next GP visit in August, I'll need to hand the PA my list of symptoms and request a neuro referral. I apologize if my thoughts are all over the place, but it's hard to stay focused when there's so much that I've kept bottled up inside for the last 4-5 years. Trying to be the good employee, wife, daughter, sister, and friend. If you've read this far, I thank you for it. Be blessed.

[jimmylegs]

great news that you're being so proactive! so your serum magnesium status has been confirmed as high normal? your dietary magnesium intake is above 400mg daily?
if so and your serum mag level is still below 2.3 mg/dL, it could be time to look at co-factors.

i am curious - which foods do you commonly use to maximize magnesium absorption and retention?

if you do read through the link provided above re more info, you'll see that low magnesium (along with various other nutrients) is consistent with the average ms patient

so to answer the question could your situation be ms, based solely on the typical low mag status in ms patients combined with your history symptoms such as athleticism, migraine, fatigue and dysphagia on top of the lazy fibro dx (not to mention high blood pressure and stress), i would say yes.

and that's just the tip of the ms nutrition iceberg.

for the time being, i would be very interested to hear about your daily dietary mag intake, because you would be the first person i had encountered with that list of symptoms as well as optimal mag status.

iima, which site do you use the most, to determine essential nutrient content for the various foods in your day to day routine?

fyi re mag and hypertension
Effect of magnesium supplementation on blood pressure: a meta-analysis
http://www.researchgate.net/publication ... e6c3dd.pdf

(and linked to that, you likely are aware that optimal mag status improves vit d3 utilization, with further links to healthy blood pressure and vascular health in general)

[lyndacarol]

At age 25, I had a sudden onset of severe fatigue which lasted 3 years. Gradually, it improved and my MD said I'd had an acute EBV infection and CFS. Thrilled to be in remission at age 29, I proceeded to engage in a strenuous exercise program to lose the 35 lbs I'd gained. I worked my way up to a 3 mile daily run, weightlifting and tennis on weekends. By age 31, I'd shrunk from a size 16 to a 6 (I'm 5'8") and felt / looked wonderful. Then it happened. One day I was about a mike into my run and my legs felt heavy, and I was exhausted. I assumed I must be getting the flu (it was Fall 1995). Within the next few weeks (in rapid succession) I developed the inability to fully empty my bladder -- I was at work and used to restroom as usual. Thinking my bladder was empty, I was horrified to find that my pants were soaked with urine that I'd failed to void. Around the sane time, I noticed that it was nearly impossible to reach orgasm, and if I did, it was weak and not worth the effort. A neuro appointment was arranged, and my clinical exam was normal as was a full MRI of brain and spinal cord...I was promptly placed on antidepressants. By 2000, I began having ocular migraines (prism-type blurring in one eye that would last about 30 minutes followed by a dull headache). By 2004, I was having mild trouble swallowing, and learned to eat very carefully and slowly. Because if the intense burning in my feet and muscle twitches combined with joint pains, I was referred to a rheumatologist in 2006 who said "I think you have fibromyalgia". I'm now 49 years old, struggling to work full time and my mornings are predictably awful with cognitive issues, numb hands, burning feet, and fleeting weakness/ heaviness in an arm or leg-- I am starting to wonder if the clear MRI has misled me? I'm not hoping for MS, but a dx would at least provide answers and prevent possible further damage! Please...am I the only person who's been undiagnosed for this long? I have an HMO an I only see the PA, so I worry that she'll simply order more blood work (they've taken liters of it). Advice appreciated. Blessings to you all.

Welcome to ThisIsMS, NytViolet.

At one time or another, we have all been in your place. Do not be concerned with "sounding like a whiner;" there are times when we just have to vent. We understand better than the average person.

Because so many of your symptoms are found in the list of the Symptoms of B12 Deficiency – "difficulty swallowing" a.k.a. dysphasia is mentioned in the narration (by the way, many medications – like antidepressants – inactivate B12 stores in the body), 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).

"Everything You Want Your Doctor to Know about Vitamin B12"

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement Disorders
Psychosis
Thoughts of Suicide

Numbness/tingling/even the "numb hands, burning feet " you describe is the textbook definition of "peripheral neuropathy." In investigating the cause of peripheral neuropathy, the University of Chicago suggests the following:

http://peripheralneuropathycenter.uchic ... #bloodtest\

Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.

Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:
Vitamin B12 and folate levels
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Lyme disease
HIV/AIDS
Hepatitis C and B

Please note that the first blood test the U of Chicago suggests is for vitamin B12. In my opinion, this is the place to start with your GP visit in August when you discuss your list of symptoms. By the way, do not take any vitamin B supplements in at least the three days before the blood tests as doing so will skew the results. (The initial testing for B12 deficiency includes #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 either a serum or urinary methylmalonic acid test.) There have been several malpractice cases won (for several million dollars each!) when doctors did not look for vitamin B 12 deficiencies and patients went on to develop irreversible neurologic damage.

If the root of your problem is a B12 deficiency, it is easily and inexpensively treated. We wish you all the best; let us know how it goes.

[NytViolet]

Thank you for the intelligent and thoughtful reply. I haven't been on antidepressants for many years, but do take BP meds. My doc has run myriad blood work and didn't mention anything abnormal except low iron (which subsequently tested normal). They're pretty cut and dry at this docs office: take hx, take blood, write script. What I truly need is in depth testing and a full neuro work up (my last was about 15-16 years ago). I have a Nutri blast daily with kale, leafy greens, cucumber, carrots, frozen banana, blueberries or strawberry, celery, flax or sunflower seed, whey protein powder and almond milk. I just recently began adding magnesium and B12 tablets to my diet as well. I thank you for the links and will be studying them this afternoon. God bless!

[jimmylegs]

hi again re the nutri blast, is there a link where i could read the specific types and serving sizes of leafy greens provided? one other question, may i inquire re the form and dose of your recent magnesium supplements? great to hear you have that and b12 in the mix, especially if you are working to distinguish your health status from that of an ms patient's

more ms nutrition info http://www.thisisms.com/forum/regimens- ... c2489.html

[lyndacarol]

I haven't been on antidepressants for many years, but do take BP meds. My doc has run myriad blood work and didn't mention anything abnormal except low iron (which subsequently tested normal). They're pretty cut and dry at this docs office: take hx, take blood, write script. What I truly need is in depth testing and a full neuro work up (my last was about 15-16 years ago). I have a Nutri blast daily with kale, leafy greens, cucumber, carrots, frozen banana, blueberries or strawberry, celery, flax or sunflower seed, whey protein powder and almond milk. I just recently began adding magnesium and B12 tablets to my diet as well.

NytViolet, in your first post you mentioned losing 35 pounds in your 30s; in a later post you mentioned that you have "gained 25 pounds, have developed high blood pressure and spend 9-10 hours daily under extreme stress."

Insulin is necessary to put on weight (fat or muscle). High insulin levels are also linked to high blood pressure. And extreme stress raises the cortisol level, which raises the blood sugar level and subsequently the insulin level. With your swings in weight, BP and stress, it would seem logical to ask your doctor for a "fasting blood insulin test" – this is NOT the same as a glucose (a.k.a. blood sugar test). The optimal test result is 3 UU/ML or lower.

If your pancreas is producing excess insulin, it may be malfunctioning and not be producing the enzymes (proteases) necessary in the metabolism of vitamin B12. Manifestations of a B12 deficiency include hepatomegaly (enlargement of the liver), splenomegaly (enlargement of the spleen), and, I suspect, enlargement of the pancreas as well.

MANY medications (antibiotics, proton pump inhibitors, etc.) inactivate vitamin B12 stores of the body. Even antacids like Tums and Rolaids reduce absorption of vitamin B12 by reducing the acid necessary for the process. It does take many years to deplete these stores. If you make it to a neurologist, without any previous doctor ordering the B12 testing, I encourage you to insist that he does. A B12 deficiency can develop at any time in a person's life.

Your diet sounds very good, very healthy; no doubt, you realize that only animal-sourced foods, like meat, fish, poultry, eggs, cheese, supply vitamin B12. All the leafy greens supply folate (B6), but not B12. Remember, do not take B12 tablets, and washout at least a week, before testing. And request your own copy of any test results – get the numbers; don't settle for "normal" from the nurse!

Even if the blood level of B12 is above 550 pg/mL, there can still be a functional deficiency in the cells/mitochondria. The metabolic pathway of B12 is complex.

[NytViolet]

Thanks for your reply. My primary issue is this: I must GROW A PAIR. I have horrible white coat syndrome and become a mumbling stuttering mess at the doctor's office lol. To say my job is killing me would be an understatement. Already dx'd with Fibro, I feel that the sedentary nature of my job combined with the high stress levels (and limited input regarding decisions -- as with most large corporations), is dumping massive amounts of cortisol into my bloodstream, raising BP to extreme levels (once I tested at 160/95) and (in my humble opinion) has activated previously dormant virus(es) which are damaging my nerves. Between the neurogenic bladder, loss of orgasm reflex, occasional dysphasia and the INTENSE burning on the soles of my feet, nerve damage has/is occurring. When I took this position 4 years ago, I had symptoms, but they had "settled down" and were mildly annoying at best. I now feel that there is again an active process occurring and I am worried where it will take me. I have my next visit in August, and will insist on in depth B12/vitamin testing and possibly a hair analysis. If my PA cannot handle thus, I will have to demand a referral. I've suffered in silence way too long (not to sound melodramatic), but 17 years??? Come on! I'm taking a basic B12 and calcium magnesium right now, but cheap, grocery store brands. Before I begin the process of shelling out for the top grade brands, I want some sort of dx. I've had 3 blood panels in the past 2 years and liver, pancreatic and other enzymes were normal -- BUT, my sugar was mildly elevated at 102. You'd think this would promt a fasting glucose; it did not. The PA doesn't seem particularly concerned with anything because she isn't the one in pain / fatigue daily. I think I also mentioned that my first blood test showed mild anemia (folic), which I've corrected with diet. The kale and mixed greens (along with the other ingredients) do help somewhat, but I'm tired of bring placated by medical "professionals". I've taken notes on every response (including yours) and will go to my August appt prepared. Once again, God bless you for taking the time to read my lengthy post and reply with helpful info. Hugs

[lyndacarol]

Thanks for your reply. My primary issue is this: I must GROW A PAIR. I have horrible white coat syndrome and become a mumbling stuttering mess at the doctor's office lol. To say my job is killing me would be an understatement. Already dx'd with Fibro, I feel that the sedentary nature of my job combined with the high stress levels (and limited input regarding decisions -- as with most large corporations), is dumping massive amounts of cortisol into my bloodstream, raising BP to extreme levels (once I tested at 160/95) and (in my humble opinion) has activated previously dormant virus(es) which are damaging my nerves. Between the neurogenic bladder, loss of orgasm reflex, occasional dysphasia and the INTENSE burning on the soles of my feet, nerve damage has/is occurring. When I took this position 4 years ago, I had symptoms, but they had "settled down" and were mildly annoying at best. I now feel that there is again an active process occurring and I am worried where it will take me. I have my next visit in August, and will insist on in depth B12/vitamin testing and possibly a hair analysis. If my PA cannot handle thus, I will have to demand a referral. I've suffered in silence way too long (not to sound melodramatic), but 17 years??? Come on! I'm taking a basic B12 and calcium magnesium right now, but cheap, grocery store brands. Before I begin the process of shelling out for the top grade brands, I want some sort of dx. I've had 3 blood panels in the past 2 years and liver, pancreatic and other enzymes were normal -- BUT, my sugar was mildly elevated at 102. You'd think this would promt a fasting glucose; it did not. The PA doesn't seem particularly concerned with anything because she isn't the one in pain / fatigue daily. I think I also mentioned that my first blood test showed mild anemia (folic), which I've corrected with diet. The kale and mixed greens (along with the other ingredients) do help somewhat, but I'm tired of bring placated by medical "professionals". I've taken notes on every response (including yours) and will go to my August appt prepared. Once again, God bless you for taking the time to read my lengthy post and reply with helpful info. Hugs

NytViolet, obviously you are intelligent and capable and will be ready for your August doctor's appointment. It is a good idea to compose your list of symptoms in the quiet of your home and discuss it at your appointment. There may very well be nerve damage occurring, but I do not agree with "experts" who say it is permanent; I believe the body is capable of healing many problems (maybe not ALL, but a good many).

I encourage you to read Could It Be B12? by Pacholok and Stuart (maybe your local library has it). The authors point out that many approved MS drugs cost over $30,000 a year, and a B12 supplement costs under $40 per year.

I am curious about the three blood panels (liver, pancreatic, and others); what does "normal" mean? Were the test results interpreted by an endocrinologist? If your fasting sugar was 102, I believe that is considered prediabetic. I would expect the fasting insulin level is also mildly elevated. The insulin test is one of the least expensive blood tests available, so I don't understand your PA's reluctance to order it.

[jimmylegs]

hi again if you can get ANY of these ordered by the doc in august, you might well end up with some VERY useful info - for these and any other tests you order, i hope you will be able to grab your own copy of the results.

serum vitamin B12: aim for at least 370 pmol/L (500 pg/mL)
serum vitamin 25(OH)vitaminD3: aim for at least 100 nmol/L (40 ng/mL). preferably 125-150 nmol/L (56-60 ng/mL). ...
serum zinc: aim for 18.2-18.4 umol/L. (~120 ug/dL)
serum magnesium: aim for .95-1.1 mmol/L. (or 2.3-2.7 mg/dL)
serum copper: aim for 17.3-18 umol/L (or 100-114 ug/dL)

please also note, if you haven't had time to go through the other link yet (something else you probably already know):

the 'normal' range is often quite a broad range which in many cases includes both sick and healthy people.
There is a much smaller range within the normal range that can be described as 'optimal'.

For example, at one lab i'm aware of, the normal range for serum zinc is given as 10-20 umol/L. at an infectious disease clinic, the normal range for tests done there was 9-14 umol/L. at my MS clinic the range is 11.5-18.5 umol/L. and at my neighbourhood lab, the range is 8.6-19.1 umol/L!!

ms patients average in the low teens. healthy controls average in the high teens, with high end healthy levels sometimes over 20. one example of toxicity in research involved levels over 36.

One example of the danger of the word 'normal' is this: recently a patient here at TIMS asked for a zinc test and was told the level was fine. When the patient asked for the number it came back 10.083 umol/L (normal range 10-20 in this case). This patient was not told that the level was suboptimal, borderline deficient, or outright deficient (which it was if you use 11.5 as the cutoff..) just that it was 'fine' - ie the computer did not red flag it because the value was within that lab's min and max setpoints.

[NytViolet]

Thank you so much for these findings; it always amazes me that the medical community sets parameters for "normal", then ignore people who fall at the very high/low end of those numbers. Perhaps a given "normal is 8-18, and a person tests at 8.0 -- you would think that this would warrant further testing. Regardless, I've started a ledger of specific testing I want done, and I would like a 2nd MRI with contrast (my first was just a few months after initial onset of physical symptoms in 1996). My doctor ruled out MS based on the absence of plaques on the MRI. There's no reason that a healthy 32 y/I female should have trouble emptying her bladder or loss of organs reflex. Now at 49, I honestly feel that I'm on the brink of an exacerbation, and it kills me to think that I could possibly be missing out on a treatment which will prevent further damage and maybe alleviate some of the fatigue. I'm so delighted to have found this site; it's a great comfort to know there are others also struggling for a dx, and to speak with ppl who have already been dx'd and know what tests to ask for. It makes my upcoming visit less daunting... Thank you for that