New Here With a Whole Lot To Say :)

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Ksandin
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New Here With a Whole Lot To Say :)

Post by Ksandin »

Hi There ! My name is Kara and I'm 25 year old mother of two biological children and a stepdaughter. My oldest is 4 almost 5, my stepdaughter is 3 and I also have a 8 month old son.

About 6 months ago I woke up to a completely numb right side of my body, I noticed this on a Thursday and by the weekend I noticed I was experiencing memory loss as well as confusion. I would ask my husband "what should we have for supper" we would decide and about 10-15 minutes after I would ask again and this would happen several times a night. I would say things in my head and then when I spoke those words they came out but instead came out in the wrong order. I spoke to my mother and she told me she was concerned I had a possible stroke in my sleep. I decided to go to the emergency because at this point I was worried. They did a bunch of blood work and sent me for a CT Scan. There were no signs of a stroke. They decided to send me for a MRI and they found several lesions on my brain. They instantly told me I had MS. Obviously not knowing really what this was I was extremely upset. I went home and was told a neurologist would be in contact with me 7-20 days after; they called 2 days later and made an emergency appointment; this had me worried.

I met with the neurologists they did a bunch evaluations on me and said we will do another MRI in six months. I suffered from all the same symptoms for those six months, except worse. I started to experience extremely painful joint like my fingers and knuckles feet knees and chronic back pain. My second MRI showed several more lesions on my brain as well as a abnormality on my liver. My doctor suspects that I now have some sort of inflammation arthritis.

I now am prescribed tylenol 3s , cyclobenzaprine and vimovo for my chronic pain. My neurologist says that my chronic pain has nothing to do with my MS; is this actually true ?

I'm suffering extreme bladder infections which I am on antibiotics for second time. As any sort of infection really bring your symptoms out I am suffering extreme numbness on the right side of my body, extreme virtigo, fatigue, and a shock like feeling in my brain. It's extremely frightening but I m so glad I found a website that allows you to post your story of MS !
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jimmylegs
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Re: New Here With a Whole Lot To Say :)

Post by jimmylegs »

hi ksandin and welcome to the forum!

a few questions.. have any of your docs asked you about diet and lifestyle, or referred you to a nutrition specialist?
were any of the tests you've had done related specifically to nutrient levels?
has anyone put you on probiotics in connection with the rounds of antibiotics?
do you think the nutrition angle could be a useful line of investigation?
if so, lots of info available along those lines, but it's not typically used or applied in mainstream medical care.

again, welcome and I hope you find relief from your symptoms soon.
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want2bike
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Re: New Here With a Whole Lot To Say :)

Post by want2bike »

Tylenol will destroy your liver. The only answer the doctors will have is the drugs. Nutrition is where you will get healing. Dr. Bergman does a good job of explaining autoimmune disease. Give his treatment a try and see if it works. In about 30 days you will probably not need a doctor anymore.

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lyndacarol
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Re: New Here With a Whole Lot To Say :)

Post by lyndacarol »

Ksandin wrote:Hi There ! My name is Kara and I'm 25 year old mother of two biological children and a stepdaughter. My oldest is 4 almost 5, my stepdaughter is 3 and I also have a 8 month old son.

About 6 months ago I woke up to a completely numb right side of my body, I noticed this on a Thursday and by the weekend I noticed I was experiencing memory loss as well as confusion. I would ask my husband "what should we have for supper" we would decide and about 10-15 minutes after I would ask again and this would happen several times a night. I would say things in my head and then when I spoke those words they came out but instead came out in the wrong order. I spoke to my mother and she told me she was concerned I had a possible stroke in my sleep. I decided to go to the emergency because at this point I was worried. They did a bunch of blood work and sent me for a CT Scan. There were no signs of a stroke. They decided to send me for a MRI and they found several lesions on my brain. They instantly told me I had MS. Obviously not knowing really what this was I was extremely upset. I went home and was told a neurologist would be in contact with me 7-20 days after; they called 2 days later and made an emergency appointment; this had me worried.

I met with the neurologists they did a bunch evaluations on me and said we will do another MRI in six months. I suffered from all the same symptoms for those six months, except worse. I started to experience extremely painful joint like my fingers and knuckles feet knees and chronic back pain. My second MRI showed several more lesions on my brain as well as a abnormality on my liver. My doctor suspects that I now have some sort of inflammation arthritis.

I now am prescribed tylenol 3s , cyclobenzaprine and vimovo for my chronic pain. My neurologist says that my chronic pain has nothing to do with my MS; is this actually true ?

I'm suffering extreme bladder infections which I am on antibiotics for second time. As any sort of infection really bring your symptoms out I am suffering extreme numbness on the right side of my body, extreme virtigo, fatigue, and a shock like feeling in my brain. It's extremely frightening but I m so glad I found a website that allows you to post your story of MS !
Welcome to ThisIsMS, Kara.

As you will discover, each of us here at TIMS has his/her own unique ideas about MS. Mine revolve around insulin. (As I share my ideas, remember that I have no medical background.) The following sentence, however, is scientific fact: Pregnancy is one of two times in life when a woman is in an insulin resistant state (her body is producing increased insulin in order to gain weight and put weight on the fetus). I suspect that the mother's body often does not revert to normal secretion immediately after delivery of the baby.

I think this could be your case because: your son is 8 months old; 6 months ago your symptoms began. I believe that your pancreas did not return to normal insulin production after your son was born. Since your symptoms persist, I believe your pancreas continues to produce excess insulin today. If you request your GP to order a "fasting blood insulin test" (which is NOT the same as a glucose/blood sugar test), this problem can be ruled out if your insulin level is found to be in the optimal 3 UU/ML or lower range.

This is only one cause for excess insulin production (and, of course, cannot be the mechanism in men, children, virgins, or menopausal women). Diet (gluten, carbohydrates, artificial sweeteners, trans fats, MSG, BPA) can also trigger increased insulin levels – whole wheat bread and artificial sweeteners can do this more than common table sugar! Pancreatic infection/inflammation can also affect insulin levels.

Since gluten sensitivity can develop at any time in one's life, and since many of your symptoms are similar to those described by Dr. Amy Myers when she appeared on The Dr. Oz Show (12/2/2013) and spoke about gluten sensitivity, this might be something else to consider and rule out: http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog, depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.

@4:30 she says more than 18 million have been diagnosed with gluten sensitivity; suspects that 1 in 2 probably has gluten sensitivity

@5:00 mention of study in New England Journal of Medicine several years ago that linked gluten sensitivity to 55 diseases

Blood tests for gluten sensitivity are notoriously inaccurate, but your doctor could start with those; however, you might be able to discover a gluten sensitivity by simply eliminating gluten from your diet for 6-8 weeks and see if you observe any changes.

By the way, the bladder is controlled by smooth muscles (the detrusor and sphincter muscles) which are thickened and stiffened by excess insulin. Inadequate voiding of your bladder may be leading to your bladder infections.

These are my suggestions for discussion with your GP. We wish you all the best. Please let us know how things go.
Last edited by lyndacarol on Sat Mar 01, 2014 11:58 am, edited 3 times in total.
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?"
Ksandin
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Re: New Here With a Whole Lot To Say :)

Post by Ksandin »

Hello ! Thank you so much for replying !

My neurologist has never discussed a new diet plan with me which I found extremely strange as everything I've read states diet is a huge part of MS ...

I've expressed my concern to my neurologist because it is just getting worse. I have zero appetite for anything but I force down atleast 3 yogurt drinks supper and try light snacks. Food has no taste what so ever and it's hard to even swallow.

My personal life is extremely stressful at the best of times , and unfortunately I am a heavy smoker which I'm trying to quit. I'm extremely emotional as well and sometimes think there may be something else going on ?
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jimmylegs
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Re: New Here With a Whole Lot To Say :)

Post by jimmylegs »

OK - depressed appetite is a huge clue, as is smoking, stress, and emotion!
do you have your own copy of your lab tests done to date? would be a good idea to have a look through and see if any essential nutrient levels have been tested so far.
also, do you have a doctor who would be receptive to ordering nutrient tests or at a minimum, referring you to a nutrition specialist?
there will definitely be steps you can take to improve your appetite and increase the nutrient density and diversity of your diet.
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CaliReader
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Re: New Here With a Whole Lot To Say :)

Post by CaliReader »

Hi Kara,

Welcome. I'm sorry you have a reason to be here.

Pain is a common ms symptom. So are bladder issues. Please do be careful with long term use of tylenol. Many of the ms meds also effect the liver. You are young and could conceivably be on treatment for the next 60 years. Liver function is important. I would work on finding a doctor who will help you keep track of those details.

Re emotional issues, that also can come with ms. Re smoking,I know it's not easy to quit, but every research study I've seen points to smoking as associated with more severe ms. It's clearly your choice, but 30 years down the road it could make a real difference.

It will be a while, (I've read, usually a year) before you work through the shock. Try to be kind to yourself. You will get used to all this, but it's not an easy process. Hang in there.
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lyndacarol
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Re: New Here With a Whole Lot To Say :)

Post by lyndacarol »

Ksandin wrote:My neurologist has never discussed a new diet plan with me which I found extremely strange as everything I've read states diet is a huge part of MS ...

I've expressed my concern to my neurologist because it is just getting worse. I have zero appetite for anything but I force down atleast 3 yogurt drinks supper and try light snacks. Food has no taste what so ever and it's hard to even swallow.

My personal life is extremely stressful at the best of times , and unfortunately I am a heavy smoker which I'm trying to quit. I'm extremely emotional as well and sometimes think there may be something else going on ?
You are a smart woman and you KNOW the smoking MUST go! Quitting is extremely difficult, but must be done.

Stress raises the body's cortisol level, which raises the glucose (a.k.a. blood sugar) level, which raises the INSULIN level!

Look through the Diet forum here at ThisIsMS as a starting point.
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?"
centenarian100
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Re: New Here With a Whole Lot To Say :)

Post by centenarian100 »

I definitely agree with lynda regarding smoking; You have got to quit. Smoking is modestly associated with MS and also increases the risk of cardiovascular disease and lung cancer. It also cause wrinkles and bad breath.

Here are some tips

1) pick a quitting date
2) tell all of your friends and family that you plan to quit and tell them to support you in your efforts. Tell your friends who smoke to not smoke around you or to quit with you
3) The night before your quit date, smoke your last cigarette and then get rid of all cigarettes, lighters, matches, etc from your house
4) Use some sort of nicotine replacement therapy (patch, gum, etc) as they are proven to improve success. then wean the replacement therapy over time
5) Consider taking up running or some other exercise to try to replace the high you get from smoking
6) If you crack and end up smoking, do not become discouraged. This can be part of the process along the path to success. Stay determined and pick and new quit date.
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NHE
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Re: New Here With a Whole Lot To Say :)

Post by NHE »

If smoking did to people's outsides what it does to their insides, then the tobacco companies would quickly go out of business.

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Youarethecure
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Re: New Here With a Whole Lot To Say :)

Post by Youarethecure »

You have to quit smoking.
I picked a day in my head 1 week before it and I have not smoked since then. It has been 5 weeks now and I will never ever smoke again.
I did it cold turkey, people still smoke around me but I still don't smoke. This is a true reason to put down cigs for the rest of our lives.
Your urge to be healthy and fight against this disease will outweigh the urges to smoke again.
want2bike
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Re: New Here With a Whole Lot To Say :)

Post by want2bike »

I can relate to how difficult it was to stop smoking. Most difficult thing I have ever done. I started smoking when I was 20 years old. Back in the 60's the FDA did not require the cigarette manufactures to put warning labels on the packs. As I recall back then cigarettes were 25 cents a pack. Can't believe how much cigarettes cost today. Big money in cigarettes and that is probably why the FDA still allows it. I smoked for 20years and at the end was smoking 3 packs a day. One day I came home from work and my heart was doing crazy things and I though my heart was going to bust. I realized I was close to death and knew if I didn't give them up I would die soon. At that point I got serious about quitting. Think what help the most was realizing I would have to substitute some other activity. Started different activities such as walking first, then jogging, and then riding my bike. I knew I had to get my mind off of cigarette and you can't exercise and smoke. The first month was the most difficult and it was the hardest thing I ever did. It was a mind thing for me but you have to give up cigarettes if you want to get better. There is no other way to put it. You can't keep putting toxins in your body if you have disease. My advise is investigate every thing you can do to quit and give them up. Good Luck.

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