This Is MS Multiple Sclerosis Community: Knowledge & Support

So I am no stranger to doctors offices & being poked, scanned, re-scanned, & having blood drawn since 2007 when I really started to get sick. In 2011 was told I had had MS it was the doctors deferential diagnosis only to "take" it back, & now it looks like it may have been true.

I have been having symptoms that are all very similar to MS numbness, heaviness in my legs, with the sensation that bottom of my feet are being poked with red hot nails, also occurs along my face, scalp, portion of my groin area/low back, neck, arms & hands. Weakness in my arms & legs which has only worsened after having my son August 2012, a pregnancy which was punctuated by hospital bed rest monitored pre-eclapcea & insulin controlled gestational diabetes. The tests in 2011 came back "clear" both the lumbar puncture & the MRI, although none of the symptoms resolved.

After having my son in August 2012 I was feeling a little more awful I thought I should even having had a c-section or because of having a baby. Concerns which were validated while getting a routine MRI December 2012 to check to ensure no regrowth of a pituitary tumor a lesion was discovered within my optic chiasim, diagnosed as optic neuritis which is sometimes about 50% of the time a first symptom for some MS patients.

So just because I was clear once doesn't mean anything does it?

Health wise - as of right now I am experiencing numbness, tingling in my feet & legs as described above it lasts several hours but is extremely painful, with periods of muscle spasm like feelings in small clusters of muscles in my legs, I am extremely fatigued, my limbs feel very heavy, I feel off balance, my husband has noticed I am not as sharpe as I typically am, I have "failed" an extended visual fields test. I was tested for and was negative for sjogren's, my B12 was fine, vitamin D a little low, potassium also fine, red blood cells a little high, white blood cells were fine. This February I had an autonomic EMG & EMG all were within normal limits. I have hypertension, hypothyroidism, migraines & GERD all are closely monitored & controlled with medications prescribed by doctors who work together. I eat fairly healthy, moderately active because of my son. Other health issues have been managed for over 10 years.

Sorry if this is all over the place it's just frustrating - MS would be an answer to what's going on but then it's really not the one you want either. Thanks to anyone with insight.

hi and welcome

sorry you're feeling badly :S

yes, you can have a clear LP at one point, and have it come back positive later. i'd say most if not all of the diagnosed had clear LPs at earlier points in their life.

the test indicates chronic inflammation. if you are heading for an inflammatory state or it is there but hasn't lasted for long enough, i guess you could have a clear LP regardless of trouble brewing.

nice to hear they tested your b12 and d3. do you have the actual results? also, there are a few more nutrients it would be wise to look at. magnesium and zinc would be smart to know. lots of the issues you describe could be associated with suboptimal nutrient status.

what other things have you been managing long term? could help clarify possible nutritional influences.

here's some into reading on ms and nutrition if you are interested:
regimens-f22/topic2489.html

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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

Welcome to ThisIsMS, BLCG2012.

I suspect excess insulin and resulting insulin resistance in skeletal muscles; I think this may be part of your muscle spasms, weakness, fatigue, and other symptoms. I believe the burning sensation in my feet and legs is actually due to the highly irritating nature of insulin damaging the inside of my blood vessels (and not initially the nerves).

By the way, a woman's body produces extra insulin during pregnancy to support growth and put fat on the baby she carries. It is my opinion that after the child is born, the mother's pancreas does not always return to normal insulin production. Maybe your body continues to over-produce insulin. Ask your doctor for a "fasting blood insulin test"– this is NOT the same as a glucose test. The optimal result for the insulin test should be 3 UU/ML or lower.

Insulin also promotes blood clotting, high cholesterol, heart disease, diabetes, and high blood pressure – you mentioned having hypertension.

I think this imbalance of the hormone insulin causes other hormone imbalances – possibly thyroid hormones. You also mentioned having hypothyroidism. I recently came across the following information: "Many medications also slow down the thyroid and also cause iodine deficiency. Lithium and corticosteroids [Solu-Medrol and prednisone] are thyroid-slowing and should be used sparingly if at all." Corticosteroids are frequently prescribed for our symptoms – these may not ever be appropriate for you because of your hypothyroidism (a situation to be discussed with doctors).

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My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

Have you treated for Lyme, Bartonella and Babesia? These infections are being misdiagnosed as MS at a very alarming rate. Educate yourself on the controversy and the new laws being passed, especially in VA which now requires doctors to notify all patients in writing that testing for lyme they may have false negative results. These infections can mimic MS, so please investigate.

I had a clear spinal tap. Apparently about 50% of the time if it's repeated it would no longer be clear (if you have developed MS). You can have MS and still have a clear spinal tap forever (about 3% of people with MS have a clear spinal tap if it's done using a silver staining/isoelectric technique; an older technique that's still used in some places gives clear spinal taps 30% of the time). If you have a clear spinal tap, it is indicative of a better prognosis.

I also was diagnosed with MS, then maybe not, then CIS, then nothing but let's run some tests, then MS again. It was a few years process.

I just want to be clear the burning tingling, heavy feelings in my legs & arms all been occuring since 2007, worce since 2011, and even worse lately. I haven't injected insulin since 8/30/12, so I would agree if I were still diabetic that it was diabetic neuropathy but I had this before pregnancy, intensified all thru pregnancy & has hung on after pregnancy. My A1C was 5.0 just a few weeks ago because I wasn't able to breastfeed very long due to my BP being to out of control using labatol only they didn't do my "final" blood work until after i stopped because breastfeeding throws the numbers off. I have an excellent endocrinologist who specializes in the link between certain BP medications & diabetes, he also is very focused on cholesterol & it's effects on the liver & blood so all of that is well monitored. I have a heart problem (tachycardia) & have BP isssues as well they don't know why, I can be sleeping they found thru the use of a halter monitor 24hrs that my pulse will be 150bpm & then be 66bpm.

I work with a nutritionist already because of my health issues, & for the most part we eat a Mediterranean diet, my husband can not digest beef or similar meats so we basically eat boneless chicken breasts, ground pork or turkey for the bulk of the meals.

My magnesium & zinc are also perfectly fine, they have tested that too because def of those can mimic B12 def & because they can play a roll in funky heart rhythms, I am about out of blood for them to test I think

As a result of having the tumor removed from my pituitary gland I have adrenal insufficiency & prednisone is the only thing I can use to treat it when my levels are to low but I have been years without a crisis & my last cort stem came back fine. They monitor my thyroid anyhow every 3 months & when I was pregnant my sugar levels, because prednisone & other steroids can wreak havoc on you sugar levels & insulin resistance.

I was tested for Lyme disease twice now with negative results - have only been bit by a tick once after the 1st test & before the '13 negative result, when it happened I was actually given the antibiotic to take that day. In Maine they take Lyme disease very seriously thankfully because of the deer & moose population it's a huge problem.

As a side note no I am not depressed I am in love with my son, and happily gave up my career to be a mommy who stayed home with her son. I would love nothing more then to figure out what is sucking the life out of his mommy because he is the happiest & brightest thing that has ever happened to me.

fyi the 'normal' ranges that usually describe 'fine' for magnesium and zinc are way too wide. in some cases that normal range is only informed by the rest of the patients in the lab and no healthy controls, plus the tails of the curve beyond two standard deviations are not removed in the way that they do for establishing research ranges. you can be 'fine' and still really suboptimal. there's loads of research showing deficiency inside the normal range.
if your magnesium is above 0.95 mmol/L and your zinc is above 18 umol/L then you could actually be in optimal condition for those two.

_________________
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

I am amazed at how many people with MS, acknowledge that they've been bitten by a tick, taken the antibiotic and then think it's done. If you are from Maine where they take Lyme seriously, than I'm sure you are familiar with the co-infections Babesia and Bartonella. It is just about universally known to educated people on lyme disease and the controversy that if you are bitten by a tick it is the rule that you are likely have more than one infection, not the exception. Have you treated babesia? At the minimum you should be on minocycline which covers both lyme and MS. And if you are taking steroids you should stop, but be on minocycline as well because a negative lyme test means nothing as evidenced by this law: A law like this only gets passed when there is a very very very big problem.

http://lymedisease.org/news/lyme_diseas ... -bill.html

It is now a law in Virginia as of today that a doctor must provide written information to a patient with every lyme disease test , stating that a negative test does not mean you do not have Lyme. What does this say about the testing? It stinks and is the cause of lots of misdiagnosis. I know you are sick, you could be mistreating yourself and making yourself worse. I would take my chances on treating with long term antibiotics if I were you especially since you were bit by a tick and you know it! It took my cousin near death after 13 years of mistreating to realize he had 6 infections! Please try and contact a lyme disease support group. I don't mean to come off sounding mean, but it takes a long time to get better and it's not an easy road but most people get better when they get the right treatment and it's important to start treating sooner than later.