Life choices = MS Diagnoses

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Life choices = MS Diagnoses

Postby crystal100472 » Wed Mar 20, 2013 12:25 pm

Hi all,

I'm totally confused and have no Idea where to start with my post. I'm 40 years old and I was told about a week ago by my GP that I have 3 lesions on my brain and she wants to send me to a neurologist to confirm MS diagnoses. I was at work when she called me to tell me. I had no idea they even thought this was a possibility. I thought she was looking at my thyroid. When I said MS??? Are you sure?? I didn't even know you thought it was MS where did this come from. She said well we found 3 lesions on your brain and not to worry but she wanted me to see a neurologist ASAP. I have no family history of MS. The only think I knew about MS was seeing things on TV. I just flashed to a wheelchair. After reading on line I've been a little more educated about MS but yet VERY confused because everyone is different. I read my MRI report and have my first neurologist appointment April 4th. I have no Idea what to expect. Does the lesions mean I have MS? I'm really worried and not sure what to do. I have no family history of MS and for so many years I have felt like a hypochondriac. This might sound crazy but after reading about MS I almost was revealed that maybe I will finally start to feel better.

Here is a little background.

I had a gastric by-pass over 10 years ago. I knew when I made the choice to have weight loss surgery I would have to make some big commitments and things wouldn't be easy. Years struggling with what doctors say are "normal' issues after weight loss surgery I'm wondering if I not only altered my stomach but also altered my brain chemistry. I'm really beating myself up over many choice I have made. While still trying to look forward and not behind. Could weight loss surgery have contributed to my MS diagnoses?

The past 4 years have been doctor after doctor.. Illness after illness. I have had chronic fatigue, depression anxiety, ADD all started around lets say 30. I've been treated for hypothyroidism for 20 years, I've taken V-B12 shots monthly after my bypass. I had Clostridium difficile CDIFF bacteria infection that almost killed me 4 years ago, It was undiagnosed for a year I was called at home on the weekend by a doctor that wasn't even mine. They said they never seen that infection in someone so young. It has came back every year for 3 years and Last year at this time my gastro finally thinks he got it. About a year ago is when I was finding it very hard to walk up stairs, get out of bed, and finally the start of 2013 my fatigue got so bad I found myself so tired I wanted to lay on my floor in my office. I've missed many days of work because of my fatigue and just feeling sick all the time. January my nausea was so bad I was vomiting every 3 hrs or more. I had no faith in my GP because of many misdiagnoses that I just made an appointment with my gastro. He told me I don't think it has anything to do with your stomach it has to do with your head maybe vertigo and suggested I talk with my GP. I was so frustrated with my GP that I wasn't sure what to do. I have told her for months I didn't feel well and my legs are swelling but she never did anything. It was always something I needed to rest, I was stress, I needed to watch what I was eating. All good points. She did a bunch of blood work and ordered an MRI(that I thought was for my thyroid). My V-D was 13 so that made her think I had something wrong with my thyroid she sent me to a Endo and Diabetes doctor and I also did the MRI. The Diabetes doc told me because of my gastric by-pass I'm not absorbing nutrition and that I'm malnutrition and I needed to take 5000 of V-D every day and get more Calcium. I left her office feeling very battered because of her lack of empathy. I went to get my MRI Thinking ok they are looking at my Thyroid imagine my shock when I get the call at work staying I have MS. She said well at least it isn't brain cancer. WOW I said yes your right. But she gave me no Idea what to expect and was all my symptoms for years MS, is 3 lesions a lot and is that a concrete diagnoses? I'm sure I will find out more after my appointment but I can't stop thinking about what I should be doing, Should I tell family or friends. Will this finally explain how I've felt for so many years? When I don't feel good I think is it something I can be doing different am I hurting my self even more.

Thank you everyone for reading my story. Any input would be very much appreciated.
crystal100472
Newbie
 
Posts: 3
Joined: Wed Mar 20, 2013 11:04 am

Advertisement

Re: Life choices = MS Diagnoses

Postby jimmylegs » Wed Mar 20, 2013 12:47 pm

welcome to the forum!

i will post some info for you later this eve. for now, gotta run!
jimmylegs
Volunteer Moderator
 
Posts: 9143
Joined: Sat Mar 11, 2006 3:00 pm

Re: Life choices = MS Diagnoses

Postby crystal100472 » Wed Mar 20, 2013 12:58 pm

Thank you.

I also should tell you I have had months of blurry vision. I have so many symptoms I'm not sure what is like MS. Everyone's journey is so different. :oops:
crystal100472
Newbie
 
Posts: 3
Joined: Wed Mar 20, 2013 11:04 am

Re: Life choices = MS Diagnoses

Postby jimmylegs » Wed Mar 20, 2013 3:12 pm

okay re your question "I had a gastric by-pass over 10 years ago... Could weight loss surgery have contributed to my MS diagnoses?"

here's the thing. there are a lot of well researched nutrient issues in ms. the usual problem is the good old disconnect between research and policy/practice. so, it's up to the patient to dig through the research and figure out what you'd like to look at.

fortunately with gastric bypass the nutritional aspect is obvious and therefore way more front and centre in the mainstream. you have mentioned vit b12 and vit d3. these nutrients are the ones i would say are actually on the radar when it comes to ms, too. they're a good start.

there is a lot of great research on the nutritional consequences of gastric bypass. unfortunately the wheels often come off when it comes to interpreting the results of nutritional bloodwork.

luckily it's not hard to mess up a d3 level of 13. no matter whether you're talking ng/mL or nmol/L, either way that is NO GOOD.

besides d3 and b12, may i ask what other nutrient levels you have had tested over time? and do you have your own copy of all the results?

for more info, here are some recent posts i put up related to gastric bypass and nutrient deficiency:

regimens-f22/topic2489-450.html#p199198
hot off the presses (may 2012) :roll: someone can be seronormal for zinc, yet still deficient!
A case of acquired zinc deficiency
http://dermatology.cdlib.org/1805/01_cs ... ticle.html
"The patient was initially treated with oral prednisone for two weeks without any improvement... Pertinent laboratory values showed normal zinc level ... A punch biopsy revealed marked parakeratosis with underlying epidermal hyperplasia and spongiosis. The upper epidermal layers exhibited striking pallor with hypogranulosis. No fungal organisms were identified with Periodic acid-Schiff stain (Figures 2 and 3). Serum zinc levels were within normal limits 88 µg/dL [jl edit: that's only 13.5 µmol/L]. However, given the patient’s history of gastric bypass, clinical presentation and histological findings, the patient was diagnosed with a nutritional deficiency. Moreover, the patient began supplementation with zinc sulfate 220 mg/day with near resolution of his hand dermatitis in just 6 days, further supporting the diagnosis. Although biotin and essential fatty acid deficiency are in the differential diagnosis, the rapid improvement of the patient’s skin after only zinc supplementation suggested zinc deficiency to be the cause.


introductions-f20/topic21889.html#p206395
you're not crazy. ms has an associated set of nutrient depletion issues. gastric bypass patients are at risk of nutrient depletion also, for obvious reasons.

fyi vit D3 and b12 both are absorbed better when there's enough zinc in your system. zinc is known to be lower in ms patients and is commonly deficient in gastric bypass patients.

zinc is also critical to intestinal health and eye health. if your PCP tested your serum zinc, see if you can find out what the result was. fyi, very important: zinc deficiency or just hypozincemia is known to occur INSIDE the 'normal range'. this fact does not seem to be well understood in general practice.

sample related science, just general info applicable to anyone:

Effect of Zinc Supplementation on Respiratory Tract Infections in Children With Cystic Fibrosis
http://deepblue.lib.umich.edu/bitstream ... sequence=1
Zn adequate CF subjects (Znþ) were defined as those subjects with 90 mg/dl plasma Zn as determined by flameless AA at baseline. Subjects exhibiting inadequate Zn status (Zn) had plasma Zn levels 89 mg/dl or two standard deviations below our normal database of 110 +/- 10 mg Zn/dl. Although all subjects exhibited plasma Zn levels within the clinically accepted ‘‘normal’’ range (70–120 mg/dl), results from a number of our research studies have demonstrated that subjects exhibiting low Zn levels (<90 mg/dl) are more susceptible to infections and tend to have higher levels of plasma oxidative stress molecules and inflammatory cytokines even in the absence of outward infections.

so. normal ranges are way off for zinc in terms of what is 'good' normal and what is 'bad' normal, and the normal ranges can vary widely from lab to lab.

where you really want your serum level to be is around 18 umol/L. (that converts to 118 mg/dL if you want to compare to the study above.. note how close this number is to the extreme top of the 'accepted 'normal' range' as quoted above (their emphasis on the term normal, yay!) .

moving on to specifics in your case:

Zinc deficiency: a frequent and underestimated complication after bariatric surgery.
http://www.ncbi.nlm.nih.gov/pubmed/20706804
BACKGROUND: Although zinc deficiency is common after bariatric surgery, its incidence is underestimated. The objective was to monitor zinc and nutritional status before and 6, 12 and 24 months (M6, M12 and M24) after gastric bypass (Roux-en-Y gastric bypass), sleeve gastrectomy and biliopancreatic diversion with duodenal switch (DS) in patients receiving systematised nutritional care.
METHODS: Data for 324 morbidly obese patients (mean body mass index 46.2?±?7.3 kg/m(2)) were reviewed retrospectively. The follow-up period was 6 months for 272 patients, 12 months for 175, and 24 months for 70. Anthropometric, dietary and serum albumin, prealbumin, zinc, iron and transferrin saturation measures were determined at each timepoint.
RESULTS: Nine percent of patients had zinc deficiency pre-operatively. Zinc deficiency was present in 42.5% of the population at M12 and then remained stable. Zinc deficiency was significantly more frequent after DS, with a prevalence of 91.7% at M12. Between M0 and M6, variation in plasma prealbumin, surgery type and zinc supplementation explained 27.2% of the variance in plasma zinc concentration. Surgery type explained 22.1% of this variance between M0 and M24. Mean supplemental zinc intake was low (22 mg/day). The percentage of patients taking zinc supplementation at M6, M12 and M24 was 8.9%, 20.6% and 29%, respectively.
CONCLUSIONS: Reduced protein intake, impaired zinc absorption and worsening compensatory mechanisms contribute to zinc deficiency. The mechanisms involved differ according to the type of surgery and time since surgery. Zinc supplementation is necessary early after bariatric surgery, but this requirement is often underestimated or is inadequate.

Macronutrient and Micronutrient Disorders
http://www.medscape.org/viewarticle/721429_5
Too rapid a weight loss induced by RYGB is not uncommon and occurs from inadequate calorie intake (owing to gastric restriction), possibly combined with a relative protein and fat malabsorption (dependent on the length of the common channel). The rapid phase of weight loss occurs within the first 6-12 months after RYGB in most individuals. Maintaining proper nutrition after RYGB is, therefore, a complex challenge currently facing physicians ( Box 4 ). The requirement for proper nutritional surveillance is especially important in those individuals who have undergone a malabsorptive bariatric procedure, such as a duodenal switch (a type of biliopancreatic diversion) or a distal gastric bypass.[59]

put the info about the 'normal' range and your situation together and you can see see it's entirely likely that you have an unrecognized case of hypozincemia.

in this case study, zinc therapy simultaneously improves a patient's eye, skin and bowel problems:

Zinc deficiency manifested by dermatitis and visual dysfunction in a patient with Crohn's disease
http://link.springer.com/article/10.100 ... 2?LI=true#


there that's it for now. if you do have some blood results kicking around we can have a look and see if anything comes up that had previously been disregarded as 'normal'.
jimmylegs
Volunteer Moderator
 
Posts: 9143
Joined: Sat Mar 11, 2006 3:00 pm

Re: Life choices = MS Diagnoses

Postby lyndacarol » Wed Mar 20, 2013 4:49 pm

Welcome to ThisIsMS, crystal.

YOU ARE NOT A HYPOCHONDRIAC! You have genuine symptoms; you need a "disease detective." Although your GP recommends a neurologist ASAP, I am not sure it is time for a neurologist yet.I tend to believe that if you see a surgeon about a problem, he will find a solution in surgery; if you see a neuro, he will only see the problem/solution in neurology. I just read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize."

I suggest you ask your GP or endocrinologist to order a "fasting blood insulin test" (this is NOT the same as a glucose test, as you probably know) for several reasons: 1) Insulin is known as a "fat-storage hormone." – You mentioned that you had had weight loss surgery, specifically gastric bypass surgery. I do not think your current problems are related to the bypass surgery, except for the fact that you must have been overweight (were producing excess insulin?) and needed the surgery. 2) It is my opinion that excess insulin dumped into the intestine damages the villi and microvilli, which then interferes with nutrient absorption. – Your blood work seems to have shown deficiencies in vitamin D and vitamin B12. Please discuss with your doctors the possibility that you have insulin resistance.

http://www.mercola.com/nutritionplan/index2.html

Factor #1: Your Insulin Level
Insulin and leptin are absolutely essential to staying alive, but the sad fact is that most of you reading this have too much, and it is pushing you towards chronic degenerative illness and increasing the rate at which you age.

Most adults have about one gallon of blood in their bodies and are quite surprised to learn that in that gallon, there is only one teaspoon of sugar! You only need one teaspoon of sugar at all times -- if that. If your blood sugar level were to rise to one tablespoon of sugar you would quickly go into a hyperglycemic coma and die.

Your body works very hard to prevent this by producing insulin to keep your blood sugar at the appropriate level. Any meal or snack high in grain and sugar carbohydrates typically generates a rapid rise in blood glucose. To compensate for this your pancreas secretes insulin into your bloodstream, which lowers your blood sugar to keep you from dying.

However, if you consume a diet consistently high in sugar and grains, over time your body becomes "sensitized" to insulin and requires more and more of it to get the job done. Eventually, you become insulin and leptin resistant, and then diabetic.

If you have high cholesterol, high blood pressure, type 2 diabetes, or are overweight, it is highly likely that you are eating too many grains -- yes, even unrefined whole grains -- as this is the most common culprit causing your insulin level to become abnormal.

Compounding the problem, when your insulin and leptin levels rise due to an excess of carbohydrates, they send your body a hormonal message telling it to store fat while holding on to the fat that is already there. So not only will excess carbohydrates make you overweight, they will effectively hamper your weight loss efforts too.

Your Fasting Blood Insulin Test
To find out your insulin and leptin levels, you need to get tested by your doctor. The test you need to ask for is a fasting blood insulin and leptin test, The tests are done by just about every commercial laboratory and the insulin test is relatively inexpensive.

Facts about Your Fasting Insulin Test:
o This test is profoundly useful. It's one of the least expensive tests in traditional medicine, yet it is one of the most powerful. A normal fasting blood insulin level is below 5, but ideally you'll want to be below 3.

o You can safely ignore the reference ranges from the lab as they are based on "normals" of a population that has highly-disturbed insulin levels.

o This is a great test to do BEFORE you start your program as you can use it to assess how well you are progressing in the program.

o If your level is above 5 you will want to consider significantly reducing most sugars and grains, even whole wheat grains, until you lower your level. Once you've normalized your insulin level you can reintroduce grains into your diet at a lower level to optimize your health.

o Exercise is of enormous benefit in improving the sensitivity of your insulin and leptin receptors, and to help normalize your insulin level far more quickly.


By the way, 3 lesions on an MRI is not a lot. AND there are conditions, other than MS, which can have lesions.
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?"
User avatar
lyndacarol
Family Elder
 
Posts: 2382
Joined: Thu Dec 22, 2005 3:00 pm

Re: Life choices = MS Diagnoses

Postby crystal100472 » Thu Mar 21, 2013 6:56 am

Thank you both for the great info it is a lot to take in.

Lyndacarol I have had fasting blood work and it all has came back what the doctors consider normal.

Jimmyleggs I will ask for a copy of my blood work and post as soon as I'm able.

Today has been a very difficult day taking me 20 minutes to get out of my car to walk into work.


I spent most of my evening reading the different posts. Thanks to everyone that is on here and helping. I very much appreciate it.
crystal100472
Newbie
 
Posts: 3
Joined: Wed Mar 20, 2013 11:04 am

Re: Life choices = MS Diagnoses

Postby jimmylegs » Thu Mar 21, 2013 9:27 am

hope your day gets better, c. i'll check back re bloodwork. might be something useful in there.
jimmylegs
Volunteer Moderator
 
Posts: 9143
Joined: Sat Mar 11, 2006 3:00 pm

Re: Life choices = MS Diagnoses

Postby Lainie » Thu Mar 21, 2013 9:48 am

I too had no family history of MS. But then again, how would I know if my grandparents or great-grandparents had it? The MRI wasn't invented until the early '90s, I believe, and my forebearers all lived in rural areas and were cared for by small-town country doctors who may not have had experience with any MS-like disease.

Digestive issues are absolutely connected to MS. Do some research on "leaky gut syndrome" and multiple sclerosis to start learning more about digestion and MS.

I had Irritable Bowel Syndrome for years before my diagnosis. I ate like crap in high school (my family's idea of a balanced meal was the family bucket from KFC) and in college I think I lived purely on Mountain Dew and Doritos...AND I smoked! We can analyze our past and worry over what we did and didn't do that could have 'turned on' the gene for MS. But face it, we had that gene to begin with, and there are MILLIONS of other people who have made the same lifestyle choices that we did, and they didn't get MS. If lifestyle choices were that important to getting MS, then WAY more people would have it.

However, when I thought about my eating habits and learned more about digestion and MS, I decided that I had to stop worrying about the past and start focusing on the present and the future. I quit smoking. I started following the "Swank MS Diet" and now am following the "Wahls MS diet." I stopped eating gluten, and the neuropathic pain in my hands and arms stopped. I stopped eating dairy, and my fatigue improved. I have added fruits and veggies to my diet, and feel stronger and better.

I still suffer from disability, but I really feel that I have stopped my progression. When I was eating horribly, I went rapidly from walking, to using a cane, to using a wheeled walker. Now for the first time I feel I have stabilized.

I sympathize with your experiences with doctors. Before I was diagnosed, I reported a number of symptoms to my doctors which I now know were MS symptoms, but instead I was told a variety of other things they could be, or I was treated dismissively. When my hands got numb, I was told I had carpal tunnel syndrome. When I got exhausted walking up a flight of stairs, I was told to just exercise more. After my child was born, I was told that my constant fatigue was the result of "being a new mom." It is so frustrating to look back at those experiences and know how wrong they were! But I also see now that each of those symptoms alone could not have pointed to MS.

However, I am going to disagree with the above poster who advised you not to go to a neurologist. It is true that a neuro is only going to look at a problem from a nervous system perspective. But I neuro is NOT going to diagnose you with MS if you don't have it. And the sooner you get properly diagnosed, the sooner you can start making decisions about your treatment.

Good luck - this is a great website to be, and you will find lots of info here!
User avatar
Lainie
Family Member
 
Posts: 63
Joined: Tue Feb 06, 2007 3:00 pm
Location: WI

Re: Life choices = MS Diagnoses

Postby jimmylegs » Thu Mar 21, 2013 10:34 am

true re ms and leaky gut. strong connections to intestinal permeability and zinc status. 2008 discussion on the subject

general-discussion-f1/topic5531.html#p39745
zinc deficiency has been linked to intestinal permeability, autoimmune response and inflammation as described here:
Zinc deficiency – Zinc is necessary in maintaining intestinal wall integrity. Supplementing with zinc could contribute significantly to healing a leaky gut in about eight weeks (Sturniolo 2001). Zinc is also instrumental in a maintaining a healthy immune system (Prasad 2002)... Even though the gut is becoming leakier, vitamin and mineral absorption becomes reduced - not increased, as you might expect - because some carrier mechanisms of absorption become damaged as part of the process. Many nutrients have to be carried across the barrier and will not otherwise be absorbed.


general-discussion-f1/topic6002.html#p44764
jimmylegs
Volunteer Moderator
 
Posts: 9143
Joined: Sat Mar 11, 2006 3:00 pm

Re: Life choices = MS Diagnoses

Postby lyndacarol » Thu Mar 21, 2013 3:13 pm

crystal100472 wrote:...

Lyndacarol I have had fasting blood work and it all has came back what the doctors consider normal. ...


Crystal – the fasting blood insulin test must be requested specifically; it is not routinely done. Test results are often described as "normal" – this is not the same as "optimal." As stated above, the ideal result for the fasting blood insulin test should be 3 UU/ML or lower.
User avatar
lyndacarol
Family Elder
 
Posts: 2382
Joined: Thu Dec 22, 2005 3:00 pm

Re: Life choices = MS Diagnoses

Postby centenarian100 » Mon Apr 15, 2013 3:18 pm

I am not an expert in nutrition like jimmylegs, but check out this article on the neurological complications of nutritional deficiency following bariatric surgery:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3432875/

You may want to request to have your B12 and copper levels checked as deficiencies in these can cause myelopathy (spinal cord disease). If you have discrete typical MS lesions in your brain, this is less likely to be explained by nutritional deficiency.

The authors also discuss the importance of thiamine, folate, vitamin D, and vitamin E
centenarian100
Family Elder
 
Posts: 350
Joined: Mon Apr 15, 2013 9:51 am


Return to General Discussion

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service