Experienced opinions please-so scared

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Experienced opinions please-so scared

Postby Breann1580 » Sun Sep 08, 2013 7:43 am

I realize this is an online forum and you aren't experts, but I feel so frustrated an helpless and I need somewhere to turn. My name is Bree and this my story:
I have birth to my second son in August 2012 via csection. Immediately after and for approx 2 weeks I had very high BP which was extremely odd for me since I had been and always do run very low. Accompanying the high bp and then lasting for an additional 2 weeks AFTER BP normalized I had a 24:7 headache. All was back to normal by about 4 weeks pp.
At approx 8 weeks pp I got a pretty bad band like headache that lasted about 3 weeks 24:7 and nothing would take it away. No meds, etc. the headache subsided and was replaced by an odd flesh colored rash on only the palms of my hand and soles of my feet. The rash lasted for about a week at which point both completely peeled. At this time, I began to notice a tingling and numbness in my right toe which over about a week progresses to include my whole right side from scalp to toe. I also began to get dizzy. Went I'm for an MRI w/ contrast to discover a very sizable lesion on the left side of my brainstem.
I was sent to a neurooncologist for a full work up. By this time I was very neurologically ill. I had no control of my right side, complete numbness and began to have trouble swallowing. I was admitted and put on solumedrol and underwent testing to include spinal MRI, brain MRI, MRI spec, lp and VEP. ALL were normal except for large lesion on brain MRI.
I had no dx. Went home and symptoms improved dramatically and I felt virtually normal. Went for a follow up MRI at the end of December (after mid nov hospital stay) and the lesion was MUCH smaller but had moved from the left of my brainstem to the center.
This ruled out a tumor. Was brought back again 2 weeks later for another scan. At this point symptoms had worsened but were now on my left side. Scan revealed lesion had again moved but was now on the right and had the appearance of a spider web. Went for a second lp, which was again negative. Doctors were now concerned it was CNS lymphoma bc of its behavior in moving. Also largely on the differential was post infectious demyelination. Was slated for another scan and 3rd LP in another two weeks. LP again normal scan again was worse so they opted for a brain biopsy to rule out cancer.
Biopsy was on the 31 st of jan, 2013. It revealed nothing! But left me very disabled upon waking up. 2 weeks in the hospital in rehab and IVIG treatment. Had a follow up mRI at 1 month post surgery. Everything was gone completely.
I've had 3 scans post op with the most recent in JUne which show no activity and only slight scarring. My next scan is in two weeks. MS is still in the differential although they're saying its only a 20% chance this cIS will go on to be MS. If it does they say its tumefactive bc of presentation.
I have no new symptoms and we are going on almost a year from initial onset. I hate that I've gone thru so much with zero answers except that its not cancer. I'm obsesse with trying to determine if my case is consistent with MS. I'm researching constantly. Please, any insight or opinions about my case would be so greatly appreciated. Thanks for listening.
B
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Re: Experienced opinions please-so scared

Postby jimmylegs » Sun Sep 08, 2013 9:08 am

hi breann, wondering if they have tested any nutrient levels? childbearing takes a huge toll on nutrient status. deficits have all kinds of symptoms that can look like ms. in fact ms patients are known to have all kinds of nutrient deficits but they are rarely tested for or treated.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Experienced opinions please-so scared

Postby Breann1580 » Sun Sep 08, 2013 9:12 am

At the very beginning, before initial MRI, I was deficient in b12 and Vit D.
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Re: Experienced opinions please-so scared

Postby jimmylegs » Sun Sep 08, 2013 9:16 am

ok so those are standard deficiencies often seen in ms. better watch for the related ones, zinc and magnesium. zinc is hugely depleted in pregnancy and a lot of your issues sound like they could be related to magnesium. also zinc helps your body absorb and retain d3, b12, AND magnesium. if you read that post on key targets below (sorry you have to copy and paste the URL) you will get the whole picture, target levels for everything. you do need to get your own copies of all your nutrition blood work over time, so that you're not flying blind with any supplements in your regimen.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Experienced opinions please-so scared

Postby Breann1580 » Sun Sep 08, 2013 9:33 am

I was slightly deficient in b12 and only mildly deficient in D. For me, the hardest part is that everything continues to be negative and I wish I had a better idea how typical it is that someone with y set of circumstance goes on to develop MS or if it is in fact a CIS caused by a virus.
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Re: Experienced opinions please-so scared

Postby jimmylegs » Sun Sep 08, 2013 9:45 am

the ranges are way off for b12 and d3. your levels for b12 should be at least 500pg/mL and for d3 you want to be up around 40-50ng/mL. were you close on either of those targets? next tests to consider would be serum zinc and serum magnesium. they are likely to be low normal. low normal is consistent with ms. high normal is consistent with healthy controls.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Experienced opinions please-so scared

Postby Breann1580 » Sun Sep 08, 2013 9:54 am

Each lab tests differently and these were the abnormal findings:
B12- 173 L. Range: 211-911
Anti thyroid per oxidase 652 h range: <60
Positive ANA
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Re: Experienced opinions please-so scared

Postby jimmylegs » Sun Sep 08, 2013 10:48 am

yep there are official normal ranges which include a range sick and healthy people, and lab ranges which include only patients. far less likely to have healthy status represented.
that b12 is definitely waaaay off the 500 target. the official 180 cutoff for deficiency is faulty.. it is only based on hematological criteria, nothing to do with neurological or cognitive markers. needs an update big time. as do the rest.

so as for the anti thyroid peroxidase result.. any discussion about hashimoto's? regardless, I grabbed this bit of advice from a thyroid health site:
"Vitamin Deficiencies
◾Due to the Standard American Diet (SAD), many Americans are deficient in key nutrients like Selenium (high in brazil nuts), Zinc (high in meat, nuts, pumpkin seeds), Vitamin A (high in carrots, yams), Omega-3 fats (fatty fish), iodine (seaweed, kelp, iodized salt), and B vitamins (healthy greens and grains) which can all have a negative effect on your thyroid function, promote inflammation and immune dysfunction. For instance, Selenium not only helps with thryoid hormone production, but also promotes glutathione production. Glutathione is your body’s most powerful antioxidant, and helps clear out toxins and heavy metals that may lie at root cause of thyroid dysfunction. The good news is that your daily needs can be met by eating just 2 Brazil Nuts daily."

a lot of cross over there between the nutrients for thyroid health and the ones that are trouble for ms patients. I have quite a few optimal target levels posted, but selenium has proved to be a bit of a toughie.
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Re: Experienced opinions please-so scared

Postby lyndacarol » Sun Sep 08, 2013 11:02 am

Breann1580 wrote:I realize this is an online forum and you aren't experts, but I feel so frustrated an helpless and I need somewhere to turn. My name is Bree and this my story:
I gave birth to my second son in August 2012 via csection. Immediately after and for approx 2 weeks I had very high BP which was extremely odd for me since I had been and always do run very low. Accompanying the high bp and then lasting for an additional 2 weeks AFTER BP normalized I had a 24:7 headache. All was back to normal by about 4 weeks pp.
At approx 8 weeks pp I got a pretty bad band like headache that lasted about 3 weeks 24:7 and nothing would take it away. No meds, etc. the headache subsided and was replaced by an odd flesh colored rash on only the palms of my hand and soles of my feet. The rash lasted for about a week at which point both completely peeled. At this time, I began to notice a tingling and numbness in my right toe which over about a week progresses to include my whole right side from scalp to toe. I also began to get dizzy. Went I'm for an MRI w/ contrast to discover a very sizable lesion on the left side of my brainstem.
I was sent to a neurooncologist for a full work up. By this time I was very neurologically ill. I had no control of my right side, complete numbness and began to have trouble swallowing. I was admitted and put on solumedrol and underwent testing to include spinal MRI, brain MRI, MRI spec, lp and VEP. ALL were normal except for large lesion on brain MRI.
I had no dx. Went home and symptoms improved dramatically and I felt virtually normal. Went for a follow up MRI at the end of December (after mid nov hospital stay) and the lesion was MUCH smaller but had moved from the left of my brainstem to the center.
This ruled out a tumor. Was brought back again 2 weeks later for another scan. At this point symptoms had worsened but were now on my left side. Scan revealed lesion had again moved but was now on the right and had the appearance of a spider web. Went for a second lp, which was again negative. Doctors were now concerned it was CNS lymphoma bc of its behavior in moving. Also largely on the differential was post infectious demyelination. Was slated for another scan and 3rd LP in another two weeks. LP again normal scan again was worse so they opted for a brain biopsy to rule out cancer.
Biopsy was on the 31 st of jan, 2013. It revealed nothing! But left me very disabled upon waking up. 2 weeks in the hospital in rehab and IVIG treatment. Had a follow up mRI at 1 month post surgery. Everything was gone completely.
I've had 3 scans post op with the most recent in JUne which show no activity and only slight scarring. My next scan is in two weeks. MS is still in the differential although they're saying its only a 20% chance this cIS will go on to be MS. If it does they say its tumefactive bc of presentation.
I have no new symptoms and we are going on almost a year from initial onset. I hate that I've gone thru so much with zero answers except that its not cancer. I'm obsesse with trying to determine if my case is consistent with MS. I'm researching constantly. Please, any insight or opinions about my case would be so greatly appreciated. Thanks for listening.
B


Welcome to ThisIsMS, Bree. What a medical journey you have been on! Since you have asked for "any opinions about your case," I will offer you my non-expert ideas, which stem from my belief that excess insulin can be responsible for many symptoms such as you describe and such as I experience with my MS diagnosis.

#1 Pregnant women secrete an increased level of insulin in order for the fetus to grow and put on weight. This is especially the case during the third trimester. It is my suspicion that many times the mother's pancreas does not return immediately to normal production when the child is born, but continues to secrete excess insulin.

#2 Insulin is a strong, irritating hormone which can cross the blood-brain barrier, can damage the interior of blood vessels, is known to thicken and stiffen smooth muscles (found in the walls of blood vessels – capillaries of your right toe? By the way, the detrusor and sphincter muscles of the urinary bladder are smooth muscles, too, which may account for urinary problems in MS.), and excess insulin results in insulin resistance in skeletal muscles, too.

#3 Solu-Medrol and all other corticosteroids raise the blood sugar level, ultimately raising the insulin level; but temporarily tying up the excess insulin.

#4 Since you have no new symptoms and it is almost a year after the initial onset, I suspect that your pancreas has resumed appropriate insulin production and your body has healed the damage done by excess insulin. If additional symptoms develop, I suggest you request a "fasting blood insulin test" – this is NOT the same as a glucose test. You would want to have the optimal insulin level of 3 UU/ML or lower.

All the best to you.
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?"
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