This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello!

I've been having some symptoms for the last 18 months and pretty serious ones for the last year, and I still don't have a diagnosis. My family doctor was certain I had MS when my symptoms first started up so I read a lot about the disease and resigned myself to the fact that I had it... then my MRI came back clear. The neurologist I saw felt that the likelihood I had MS was very small, but had no idea what I did have so he ran a lot of bloodwork. It's clear that I do have an autoimmune disease of some sort because my ANA was a high positive (1:640 speckled) and my rheumatoid factor was initially positive though I've had a retest since then and it was negative. Rheumatoid factor can be positive in RA of course, but also several other diseases.

I was referred to a rheumatologist and he felt certain I had a connective tissue disease, but said time would tell which one it actually was. Based on my evolving symptoms he tended to think it was scleroderma, but could not yet make the diagnosis. So then I researched a ton about scleroderma and resigned myself to the fact that I had a disease that was likely fatal. My rheumatologist retired in June and I was sent to a new one who is not at all sure that I even have a connective tissue disease at all. She's inclined to think that it *is* MS after all! Needless to say, I'm frustrated and my emotions are all over the place. I have symptoms on a daily basis that range from mild to disabling. From the pattern of my symptoms, I tend to think that it's *not* MS, but I thought I'd ask you experts!

Here are my abnormal blood results:
low ferritin (iron stores) but normal hemoglobin
high white blood cell count (chronic, usually around 13)
pre-diabetic level blood glucose levels (A1C of 6.0, fasting BG 5.9, post-meal readings up to 12.0)
high levels of chromium in blood
low vitamin D
ANA + (1:640 speckled)
positive rheumatoid factor

My MRI of brain and spine was clear (no lesions). My EEG was normal, as was the NCV/EMG. I also had a normal echocardiogram (mild mitral valve prolapse noted) and EKG.

I have PCOS (polycystic ovaries) and have had half my thyroid removed though the function of the remaining portion is still good. I'm 30 years old, a healthy weight, eat fairly well, and am moderately active.

My symptoms are: polyneuropathy (mostly tingling but sometimes burning/itching/pricking/wet sensations, worst in feet and legs, but occurs in my hands, a spot on my back, my pelvic area, over my scalp, tongue, lips, and one side of my face - the left - as well sometimes), suspected autonomic neuropathy (episodes of 3-4 hours at a time where I get extremely cold and shivery, constantly have to use the bathroom, get dizzy, blurry vision, and have trouble thinking clearly along with tingling over most of my body), atypical migraines, mild joint/muscle pain, mild muscle weakness, heart palpitations, sensations of the skin on my face and arms/hands tightening and stiffening, circulation problems (extremities are always ice cold in cooler weather, blueish/grey and splotchy, with numbness and tingling), and GERD.

I am on medications for GERD and my circulation (a calcium channel blocker), but nothing else.

I would love to hear feedback on whether any of this is in line with your own symptoms. Do you have a positive ANA? Low vitamin D?

All the best,

Zoe

Several studies have shown that ANA is elevated in R/R MS patients during acute/relapse stages.

jackD

Hi,

Usually MS is diagnosed with an MRI and/or lumbar puncture (spinal tap). The spinal tap will look for elevated generation of antibodies within the central nervous system compared to your peripheral blood. The two tests are Oligoclonal bands and IgG Index. Around 90% of people with MS have abnormal results of one or both of these tests.

So maybe you should ask your doctor about these tests to rule out MS. I know it sounds horrible but it actually isn't that bad of a procedure.

Good luck to you.

Hi Zoe, Just to let you know my MRI's were clear for 14 years even though I was having a lot of symptoms. I also through the years had 2 negative LP's. In Nov 08 I had a big relapse and after that I had lesions on spine/brain and got a positive LP.
Sometimes it seems your body can heal/hide the lesions by the time you are scanned or they just are too small to show up. x

P.S I had a positive speckled ANA (whatever that means)

It could also be Myasthenia Gravis, or even Lambert eaton syndrom, since you have high WBC , it's abvious your body is fighting something, so make sure you get also evaluated for those conditions.

omg, i just lost sooooooo much work the system timed me out and i hit a button by mistake!!! arg!!!! i'm not done this yet but here is a partially filled out framework that i will continue to fill in as we go...

hello, zoe!

sorry to hear about your troubles.

here is my feedback, hope you find some useful action items

RE tentative diagnoses:

*MS, autoimmune disease of some sort because my ANA was a high positive (1:640 speckled), rheumatoid factor, connective tissue disease and scleroderma

these are all about chronic inflammation, and you can take action on that one with ease, if you feel like working on nutrition (see more dietary info below).

Reduced zinc in peripheral blood cells from patients with inflammatory connective tissue diseases
http://www.springerlink.com/content/u36136120p3701qv/
"Plasma zinc was reduced in the majority of the patients ... Corticosteroid therapy ... induced a significant elevation of total zinc in all cell types, although normalization was not achieved."

RE feelings:

*stress (frustrated)
stress reduces your magnesium levels...

*emotional lability (emotions are all over the place)
Magnesium, stress and neuropsychiatric disorders (lots of research citations here)
http://mdheal.org/magnesiu1.htm
"Fatigue, muscle pain and emotional lability were significantly improved by Mg injections."

from the above's citation list: Red blood cell magnesium and chronic fatigue syndrome.
http://www.ncbi.nlm.nih.gov/pubmed/1672392
"Patients treated with magnesium claimed to have improved energy levels, better emotional state, and less pain"

RE abnormal blood results:

*low ferritin (iron stores) - ensure serum ferritin is at least 100 ng/ml. also ensure proper zinc status to avoid poor iron handling (dysregulation)

*normal hemoglobin - what's the number? minimum 13 is recommended for patients with MS (klenner protocol)

*high white blood cell count (chronic, usually around 13) - another sign of chronic inflammation

*pre-diabetic level blood glucose levels (A1C of 6.0, fasting BG 5.9, post-meal readings up to 12.0)

Dietary Magnesium Deficiency Induces Heart Rhythm Changes, Impairs Glucose Tolerance, and Decreases Serum Cholesterol in Post Menopausal Women (i know you are pre, but still)
http://www.jacn.org/content/26/2/121.short
"Magnesium deprivation ... increased serum glucose concentration."

*high levels of chromium in blood - could be related to dietary issues, or perhaps the low ferritin...?

*low vitamin D - ensure serum level is at least 150 nmol/L and no higher than 250 nmol/L.
make sure you balance the intake of vit d3 with calcium, magnesium, and zinc.
blood tests are key for all of these.
also copper (drops if zinc is in excess) and ferritin (you have to supplement iron and zinc carefully as they interfere with each other)

*ANA + (1:640 speckled) - chronic inflammation - read about diet and inflammation factor ratings - http://nutritiondata.self.com/help/inflammation

*positive rheumatoid factor - chronic inflammation - read about diet and inflammation factor ratings - http://nutritiondata.self.com/help/inflammation

RE diagnoses

*mild mitral valve prolapse

Clinical symptoms of mitral valve prolapse are related to hypomagnesemia and attenuated by magnesium supplementation
http://www.sciencedirect.com/science/ar ... 499600865X
"This study reveals a high incidence (60%) of hypomagnesemia in 141 patients with symptomatic mitral valve prolapse. After controlled oral magnesium supplementation for 5 weeks in 70 patients, most symptoms were significantly alleviated..."

i bet if i had access to full text and saw the researchers' definition of hypomagnesemia, that i would consider a higher percentage of the study group to have low magnesium status.

*PCOS
watch your serum calcium to magnesium ratio:

Divalent cations in women with PCOS: implications for cardiovascular disease
http://informahealthcare.com/doi/abs/10 ... .3.198.201
"We found significantly lower serum Mg2+ and total magnesium and a significantly higher serum Ca2+/Mg2+ ratio in the PCOS patients compared with the controls."

RE surgery

*partial thyroidectomy (function of the remaining portion is still good).
what was the removal done for exactly? was there a problem with how it functioned before? what measures indicate that current function of the remaining portion is good?

RE symptoms

*polyneuropathy (mostly tingling)

*temperature control - can be from poor magnesium status

*overactive detrusor (bladder) - magnesium calms the muscle spasms which are seen with overactive bladder

*dizziness

*blurry vision

*confusion

*atypical migraines - atypical how?

Serum and salivary magnesium levels in migraine and tension-type headache. Results in a group of adult patients
http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract
"Migraine sufferers with and without aura and tension-type headache had significantly lower levels of serum and salivary magnesium concentrations in the interical periods than a group of healthy young individuals. Serum magnesium levels tended to be further reduced during attacks in all patient groups studied."

*mild joint pain - can be due to low vitamin d3 status

*mild muscle pain - muscle pain can be from poor magnesium status

*mild muscle weakness

*heart palpitations - can be from poor magnesium status

*tightening/stiffening skin - can be from poor magnesium status

*poor circulation - can be from poor magnesium status

*GERD - how's your diet? (see below!)

RE diet

*eat fairly well
can you provide a quick diet diary with typical food and liquid intakes for two week days and one weekend (or other day off) days?
fill in the blanks:
i always (daily) eat _________
i often eat __________
i rarely eat _________
i never eat _________

i always (daily) drink _________
i often drink __________
i rarely drink _________
i never drink _________

re medications

*GERD - what do they have you on? certain GERD meds (ie PPIs such as Nexium) can deplete magnesium

*circulation/calcium channel blocker - which one? did you know that magnesium is your body's natural calcium channel blocker? and that it not only blocks calcium channel but does over 300 other jobs in your body too?

Are You Missing Critical Minerals In Your Diet?
http://www.newtreatments.org/ga.php?linkid=275
"Magnesium: An astounding 75% of the population is deficient in magnesium. Signs you may be lacking magnesium are: headaches, muscle spasms and tremors, menstrual cramps, kidney stones, heart problems (especially irregular heartbeat), and stroke. The way our bodies use magnesium is a perfect example of the way Nature establishes balance in our bodies. In fact, magnesium is Nature’s Calcium Channel Blocker. Calcium channel blocker drugs work to lower blood pressure by blocking the entry of calcium into heart cells and smooth muscle cells of blood vessels. Magnesium has protective features that balance out the negative effects of calcium overload on the heart. It blocks the entry of calcium into heart cells and vascular smooth muscle cells, reducing vascular resistance and naturally lowering blood pressure. Both minerals need to be present for the body to absorb them properly. The top food sources of magnesium to add to your diet are organic dark greens, alfalfa, sea greens (especially kelp), sea foods, wheat germ, nuts and seeds, and beans."

RE ANY FUTURE TESTING

***FYI 'normal' range for serum magnesium is 0.70-1.10 mmol/L BUT you actually don't have enough in your system unless your level is AT LEAST 0.90 mmol/L.***

hope that helps!

jimmylegs

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi Zoe,

Sorry you're going through all this! I cut your list of symptoms down to ones I had comments on, mainly the ones in your original question, which was: "Is your ANA positive? Do you have neuropathy? GERD?" Yes, I do have some of those issues, but in my case they're unlikely to be due to MS. You'll find that each and every one of us has a completely unique presentation of MS. Also, it seems that many (most?) (all?) of us have so many other medical conditions that you're bound to find someone at TIMS with any symptom you can come up with. But...that doesn't mean it's necessarily an MS symptom.

I never tested positive on any of the bloodwork you mentioned - like the ANA - but I've passed most all the other tests they use to pin down MS. And very little of your post sounds like MS-type issues to me. Like CVfactor mentioned, the MRI and lumbar puncture seem to be the ones most accepted for an MS diagnosis. Your brain & spine are clear, while my brain's jammed full of "classic" MS type lesions like Dawson's Fingers.
See them here: general-discussion-f1/topic16335.html

My spinal tap also showed positive for oligoclonal bands and IgG. I also had abnormal results on my evoked potentials (VEP, SSEP). Even though none of that is exclusive to MS, passing every MS test made me one of the most definite cases they'd seen. (I got a dx of almost 100% positive MS just from my first MRIs - before I even saw a neuro.)

But...at the same time, my EMGs showed peripheral nerve damage & carpal tunnel, which gave me the dx of a hereditary peripheral neuropathy like my dad, HNPP (NOT an MS thing, but PN in general could have many causes).

And I've had a terrible case of GERD for the last year or so - an endoscopy showed a hiatal hernia is causing it (NOT an MS thing).

And the "blueish/grey and splotchy" circulation problems in the cold that you mentioned are most likely Raynaud's Syndrome (NOT an MS thing). I'll attach links to Raynaud's info/pictures below this. I have it due to several non-MS reasons, like the few medications I do take.

Good luck to you in finding out what's bothering you and hope it's something easier to treat than MS! It could still be MS, but without passing the basic tests I'd definitely keep looking elsewhere.

Here's a link to a long thread about Raynaud's:
general-discussion-f1/topic9301-15.html
Here's a link to Raynaud's in Wikipedia - where it shows pictures:
http://en.wikipedia.org/wiki/Raynaud%27s_phenomenon
Good description of Raynaud's symptoms:


And this is from the Mayo Clinic:
http://www.mayoclinic.com/health/raynau ... ION=causes

Causes according to Mayo, although I suggest reading the whole link instead:
**Diseases - Scleroderma, RA, Lupus, Sjogren's, diseases of the arteries, thyroid conditions
**Carpal Tunnel Syndrome (I have that - from HNPP)
**Repetitive Trauma (like from piano & typing - I'm a pianist and secretary - HNPP again)
**Smoking (I used to)
**Medications (like beta blockers & estrogen - I take both of those)
**Chemical Exposure
**Injuries

_________________
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)

Thank you guys! I'm learning a lot.

One other test that many doctors use when there is a clean MRI is the Visual Evoked Potential test or VEP. This is a non-invasive test in which electrodes are applied to your scalp and you watch a flashing checkerboard pattern on a computer screen. From the electrode signals they can determine if there are any deficiencies in the optical pathways in your brain. Many people with MS have these defects even though they might not be aware of it.

But I think it may be true as others have stated that a clean MRI at one point in time may not exclude you from having MS, so you have to revert to these other tests to be sure you have MS. This could take time to make a proper diagnosis.

i had those done in 06. it would be cool to get a retest and find out if the signal has improved!

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hello,

I'm having similar tingling and burning sensation symptoms all over my body (including face) for at least 2 years now.
I do suffer from GRED and I was taking inhibitor drugs for more than 2 years (ZOTON, LANTON and recently OMPERADEX)
No test or MRI CT etc revealed any problem till recently I've been blood tested for ANA1 which shows 2.3[/u]
(lab limits are 0-1). I guess the my ANA1 results are using different than yours scale.

Anyhow, I see that your post is quite old (2011), how are you doing these days and do you have any more
information you may share with me as I'm getting desperate, since I was visiting so many specialist doctors
and went through so many tests including 2 biopsy with no result.

My mail is: yoav.benshalom@gmail.com and I'll be happy to share with you any medical information.

Thanks,
Yoav.