NytViolet wrote: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.
Signs and Symptoms of B12 Deficiency:
Sore Mouth or Tongue
Stomach and G.I. Problems
Limb Movement Disorders
Thoughts of Suicide
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.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
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease
Hepatitis C and B
NytViolet wrote: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 wrote: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
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.
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