Am I nuts?

[Ndvoice]

Started about 5 years ago with a severe flare up of something that left me I'll for months. I had trouble with balance and mobility, shooting pains, exhaustion. My bloodwork looked wonky- set rate up, WBC high. This flare up was so severe just getting down 2 steps from the front door to the car required assistance. After a few months, the symptoms largely subsided.

After and until now, I have flare ups that last a couple day. I'll likely run an evening fever, feet swell, feeling of bugs or wetness, shooting pains, exhaustion, heat intolerance. WBC remains high. The mini flare ups still feel flu like, but don't last as long.

This past weekend scared me. I went out to eat and after the meal, I was almost unable to get up from the chair. It felt like I
Didn't have control of where the thigh bones meets with the hip? I know it sounds crazy.,,but I looked at my husband and said "I don't think I can get up." I finally did pull myself up and didn't feel confident walking out.

Last year I was diagnosed with fibro. The doc said I had it for years based on my medical history. But that diagnosis doesn't seem to fit most of my symptoms?

I don't want to look like a hypochondriac, but should I push the doc on this? Does any if this fix others experiences with ms?

Thank you for taking the time to read and respond. I really appreciate it!!

Neysa

[Ndvoice]

Meant - Fit, not fix!

[jimmylegs]

hi and welcome
sorry to hear you are having a hard time!
i deal with nutritional approaches, if you are interested - there is some common ground between ms and fibro in terms of nutrition concerns.
if you're interested in discussing further, just say the word

[lyndacarol]

Started about 5 years ago with a severe flare up of something that left me I'll for months. I had trouble with balance and mobility, shooting pains, exhaustion. My bloodwork looked wonky- set rate up, WBC high. This flare up was so severe just getting down 2 steps from the front door to the car required assistance. After a few months, the symptoms largely subsided.

After and until now, I have flare ups that last a couple day. I'll likely run an evening fever, feet swell, feeling of bugs or wetness, shooting pains, exhaustion, heat intolerance. WBC remains high. The mini flare ups still feel flu like, but don't last as long.

This past weekend scared me. I went out to eat and after the meal, I was almost unable to get up from the chair. It felt like I
Didn't have control of where the thigh bones meets with the hip? I know it sounds crazy.,,but I looked at my husband and said "I don't think I can get up." I finally did pull myself up and didn't feel confident walking out.

Last year I was diagnosed with fibro. The doc said I had it for years based on my medical history. But that diagnosis doesn't seem to fit most of my symptoms?

I don't want to look like a hypochondriac, but should I push the doc on this? Does any if this fix others experiences with ms?

Thank you for taking the time to read and respond. I really appreciate it!!

Neysa

Welcome to ThisIsMS, Ndvoice (Neysa).

You are not a hypochondriac; YOU have the symptoms, we hope your doctor has the curiosity to investigate and work with you on the answer to your symptoms.

If your doctor's first step was not to rule out a vitamin B12 deficiency, I encourage you to discuss it with him.

I highly recommend this 50-minute documentary featuring Sally M. Pacholok, RN, BSN & her husband Jeffrey J. 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"



Many of your symptoms can be found in the list, Signs and Symptoms of B12 Deficiency, found in this video. Even your "feeling of bugs" is mentioned in the video.

[Ndvoice]

Hi lyndacarol & thank you for the welcome. I suppose it can't hurt to request a b12 check at my next appointment. I'm not at risk for deficiency (meat eater, vitamin taker, etc) but stranger things have happened.

[jimmylegs]

sample science specific to fibro:

The relationship between serum trace element levels and clinical parameters in patients with fibromyalgia
http://link.springer.com/article/10.100 ... 008-0593-9
"Serum levels of zinc (P = 0.001) and magnesium (P = 0.002) were significantly decreased by FM groups, whereas there was no considerable difference with selenium levels of both groups (P > 0.05). Association between serum zinc level and number of tender points (P = 0.008) and that between fatigue and magnesium level (P = 0.003) was found as meaningful. According to the results of this study, it was asserted that serum magnesium and zinc levels may play an important role in the pathophysiology of FM."

zinc and mag are low in the average ms patient too.

Levels of lipid peroxidation, nitric oxide, and antioxidant vitamins in plasma of patients with fibromyalgia
http://onlinelibrary.wiley.com/doi/10.1 ... 8/abstract
"Concentrations of vitamins A (p < 0.01) and E (p < 0.001) were significantly lower in patients with fibromyalgia than in controls, and LP levels were significantly (p < 0.05) higher in the plasma of the patients than in controls. Concentrations of vitamin C and β-carotene and levels of NO did not change significantly. These results provide some evidence for a potential role of LP and fat-soluble antioxidants in the patients with fibromyalgia"

vitamin E figures prominently in at least one dietary protocol for MS.

Primary Fibromyalgia: A Clinical and Laboratory Study of 55 Patients
http://informahealthcare.com/doi/abs/10 ... 8609092601
"Laboratory investigation revealed normal 25-hydroxyvitamin D, cobalamin, folate, estrogen, testosterone, and myoglobin in the PF patients."

regardless of 'normal' findings, it could still be worth a look at serum 25(OH)vitD3 and serum cobalamin - esp if you are interested in also ruling out MS. vits D3 and B12 tend to be low in pwMS.

hope that helps

[lyndacarol]

I suppose it can't hurt to request a b12 check at my next appointment. I'm not at risk for deficiency (meat eater, vitamin taker, etc) but stranger things have happened.

As a "vitamin taker," you should not take a B vitamin at least three days before the blood draw for the #1 serum B12 test, #2 serum folic acid test, and #3 serum homocysteine test and #4 serum methylmalonic acid tests. Taking a B vitamin before testing will skew the results.

As you noticed in the documentary, there are many at-risk categories beyond the meat/vegetarian issue:

Risk factors for B12 deficiency:
Vegetarian Diet
Pregnancy
Age over 50
Low Stomach Acid
Celiac Disease
Food Allergies
Eating Disorders Parasites
Use of Acid-Blockers
Use of Oral Birth Control Pills
Use of Metformin
Nitrous Oxide Anesthesia
Pernicious Anemia
Autoimmune Disorders
Pancreatic Insufficiency
Stomach Surgery
Intestinal Bacterial Overgrowth
Peptic Ulcer
Transcobalamin Deficiency

[Ndvoice]

I didn't consider skipping the vitamin before testing. That is a very valid point and I will make note. As for the other risk categories, other than whatever immune disorder is at work. I did watch the video and it is shocking! I'm doubtful in my case, but it's a simple enough test, so why not check it?

As for the gentleman (I'm sorry - forgot your screen name already!) I am D deficient. After months and months of large doses, my level is 27. My doc has given up, feeling fairly confident that it may be my "norm." My prior level was 10, so it is much higher, however no changes in health status. It's been a while since my mineral levels were checked, but last time it looked good and iron storage was a bit high.

Sigh...I'm realizing there are no easy answers with this stuff. Do they diagnose MS by elimination? or is there a conclusive diagnosis?

Thanks again guys, I really do appreciate the advice.since they seem to take a gallon of blood every 3 months, we might as well check the simple stuff.

[jimmylegs]

ok, since you are resistant to d3 supplementation then i would encourage you to have the doc run serum zinc and serum mag tests (this request being consistent with your having fibro as well as not being able to utilize d3 properly). if you already have these results on file, it would be worth reviewing what the numbers were. if not, a washout period prior to testing is definitely a wise idea.

the reference ranges for both serum zinc and serum mag are awfully misleading. you need to be high normal serum magnesium and high normal serum zinc to be in decent shape. you can be low to mid normal range and still be deficient. this has been established in the literature for both serum zinc and serum mag:

Ismail, Y., Ismail, A. A., & Ismail, A. A. (2010). The underestimated problem of using serum magnesium measurements to exclude magnesium deficiency in adults; a health warning is needed for “normal” results. Clinical Chemistry and Laboratory Medicine, 48(3), 323-327.

Mocchegiani, E., Muzzioli, M., Gaetti, R., Veccia, S., Viticchi, C., & Scalise, G. (1999). Contribution of zinc to reduce CD4+ risk factor for ‘severe’infection relapse in aging: parallelism with HIV. International journal of immunopharmacology, 21(4), 271-281.

if your zinc and mag levels are low to mid normal, and you push them to high normal, i would expect your vit d3 absorption to improve dramatically.

MS is definitely dxd by process of elimination/exclusion. as yet, when it comes to the final dx it's a stats thing.

i'll be interested to see your lab results if you already have some, and if not, then when any new tests come in!