Welcome to ThisIsMS

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Re: Welcome to ThisIsMS

Postby lyndacarol » Mon Apr 29, 2013 6:19 pm

missriley wrote:I am new here and looking for information, I found this site.
Over 20 years ago, my neurologist thought I had ms due to lesions on brain and spine. Then he found cervical disc herniation and put off the spinal tap. It has never been confirmed or ruled out. Lately I am having much more trouble in many areas. One major problem is leg and foot pain and weakness. I feel like I have been deteriorating rapidly for about a month, til now, that I really can barely get out of bed. I live alone most of the time. I hate to go running for tests, but I really would like it confirmed or ruled out. Is the spinal fluid the best for diagnosis.

I have been reading about vitamin D deficiency and my dr did tell me that I am deficient about a year ago. I could not understand as it was just after summer and I spend most time outdoors.


Welcome to ThisIsMS, missriley. I'm glad you found us.

Your story sounds very similar to mine – "over 20 years ago," "cervical disc herniation" (in fact, I had surgery for it which did nothing to improve my symptoms, which were later diagnosed as MS); I have NEVER had a spinal tap – diagnosis was made on the basis of symptoms and lesions which were seen on my fourth MRI.

Since there is no definitive test to confirm MS, the usual path to diagnosis is to rule out every other possibility. Find a good GP and start the process.

Vitamin D deficiency has been identified in many with MS, but most of the general population is also deficient in vitamin D so no definite cause has been established with MS specifically. Sunscreen can prevent a person who spends most time outdoors from having an optimal vitamin D levels.
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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Re: Welcome to ThisIsMS

Postby jimmylegs » Mon Apr 29, 2013 9:08 pm

good introductory article on necessary vit d3 cofactors. several of these are known to be low/deficient in the average ms patient.
http://www.vitamindcouncil.org/about-vi ... -minerals/
lower levels of any of these nutrients could impair your body's ability to synthesize d3 from sunlight.
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Re: Welcome to ThisIsMS

Postby stoch » Tue May 14, 2013 8:27 am

[Hi all] I`m new to this site so really don`t know what I`m doing :sad: so here goes I was Diagnoses with MS when I was 49 I have RRMS I started out with Avonex I would take my shot on Friday feel good next Thursday,Tried Rebif :cry: then went to Copanxone ran out of shot sites still had flare ups 6-9 mos later so I was but out of work about a year five months no flare ups still no good shot sites so I took my shots when I was feeling bad so I told my MS Doc what I was doing,so he told me about Aubagio so here goes. :-|
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Re: Welcome to ThisIsMS

Postby carlanp » Thu May 30, 2013 10:51 am

Hi all!!!

I´m Carla from Portugal and I´m new to this forum.

My husband has progressive ms and even though he had been diagnosed in August 2011, the first symptoms occurred in 2006. I found this forum 3 months ago, when I was looking for more information about D3 vitamin and I was impressed with all the information shared and how you all help each other. Thank You for sharing!

I don't know if this is the correct topic for talking about my husband's story, if not, please post it in the correct one.

It all started with the loss of strength on the left side of the body intermittently. These symptoms have been going on over 3 weeks. He did an MRI that detected three minor injuries. The doctor did all the possible tests but the diagnosis was inconclusive.

In the begining of 2007 came an horrible pain like an intercostal neuralgia. He could not sleep, we could'nt go anywhere and we've tryed everything for 3 long years to stop that pain. Because of that all the other symptoms that appeared - dizziness, exhaustion, depression,.... - caused by ms were regarded as a consequence of that pain.

We only realized that these symptoms remained, when we could finnaly control that pain. Thus, in August 2011 came the progressive ms diagnosis and my husband did a week of steroids and started treatment with interferon beta-1b.

Because until October 2012 the disease continued to worsen - tiredness and dizziness increasing, difficulty in speech, permanent drowsiness; thinking seriously in buying a cane and in the meantime, for at least 2 years, the cane was I - I began researching alternative treatments. I found the site of Dr. Terry Wahls, bought the book "minding my mitochondria" and in January 1, 2013 we began the new diet, eliminating gluten and dairy, soy, all products with aspartame, MSG and flavor enhancers, food preservatives. Just have not been able to reach the 9 cups of vegetables, cruciferous,...

We've noted improvements in fatigue and strength in the limbs but these improvements were so slow that I started researching about dietary supplements in order to acelerate the results - he started with b12 and coenzime q10.

In February i begin to read about the effects of high doses of d3 in autoimune deseases. I've found several information about the treatment that a brazilian neurologist - Dr. Cícero Coimbra - was accomplishing its patients with high and very high doses of vitamin D3 since the year 2000 and many testimonials from people suffering from MS who are treated with it for years and all of them with remarkable results. I found some groups on facebook and again testimonies of Brazilians who are either at baseline or with months and years of treatment and again with results never before achieved. The first signs of improvement are reflected primarily by the reduction, then elimination of fatigue, increase energy and strength....

Patients with more than 6 months of treatment refer the end of relapses, the MRIs attest the inactivity of injuries and some of them even disappear.

Dr. Cicero Coimbra believes that patients with autoimmune diseases in addition of having insufficient levels of D3 circulating in blood, also have difficulty in the absorption of that vitamin. Therefore, the only way to overcome this obstacle is to treat with high and very high doses.

Due to all that testimony and because the medical explanations made ​​sense, I started looking for doctors in Portugal that could develop a protocol identical to that of Dr. Cicero and found a doctor in Porto (Oporto) - Dra. Cristina Sales - a functional doctor which was last year with Dr. Cicero, learning this "new" treatment and started it in her practice, in October 2012.

When I scheduled the appointment they requested several analyzes, including the 25 (OH) D3 and 1,25 (OH) 2D3. Because of what I read before, my husband was already taking a 1200 units D3 supplement daily since February but the values ​​confirmed a failure:

VITAMIN D- 1,25 - DIHIDROXICOLECALCIFEROL)
R.e .s .u .l .t . . . . . . . . . . . . . . . . . . . . . . . . . 16.1 pg/ml - reference values=18.0 - 78.0

VITAMIN D3 -25 - HIDROXICOLECALCIFEROL
R.e .s .u .l .t. . . . . . . . . . . . . . . . . . . . . . . . . 20.70 ng/ml

Reference Values:
Deficient: <10
Insuficient: 10-30
Normal: 30-100
Toxic: >150

My husband started the treatment the 1st. of May and from the 8th day of treatment until now the progresses are daily and stunning.

In December his activity was reduced to 3 hours daily. With the diet of Dr. Terry his activity was increasing progressively and had arrived at 8 hour daily. With the D3, after one week of treatment he began to improve the coordination of movement and now he is almost free of fatigue. He is achieving 16 hours a day, free of sleep. Sleep quality improved horrors. His movements are quick, coordinated. Since last week he can carry two cups of tea with overall balance and agility... These kind of images were forgotten in my mind. I think that there are at least 4 years that he couldn't do any of this litle things.

He is now convinced that the cane is not a must-have anymore.

I know that we have a long journey ahead and we started this protocol only 30 days ago but I've seen in only 30 days what in all these years i've never seen in my best dreams.

These high doses of D3 must be followed by a doctor because excess vitamin can cause irreversible damage to the kidneys.

The treatment requires to drink at least 2,5 liters of water per day and the food should be low in calcium - milk and dairy products are prohibited, as well as soy milk and vegetable drinks enriched with calcium. Also prohibited are the spinach, the greens, the kale and watercress, almonds and hazelnuts.

Smoking is not permitted because the tobacco prevents absorption of vitamin and you can only drink a glass of wine at most 1 time per week.

The meats are not recommended because they contain heterocyclic amines so you must reduce consumption to 2 meals per week tops.

The first consultation of vitamin D3 was followed by a consultation in nutrition in order to adjust the feeding habits of each patient.

We will stay gluten free. :)

Besides D3, she prescribed DHA Ómega 3; choline bitartrate; b12 and b6; magnesium and a multivitaminic compound. She recommended keeping the coenzime q10.

I'm so, so happy that I need to share this information with the world and because the major testimonies that I've found were in portuguese i'm trying to share it with you, in my basic english.

I found a blog of an Australian lady who makes the treatment with Dr.Cícero Galli Coimbra, with the exact explanation on how this neurologist describes the D3, its performance, and implications and the treatment protocol. My english doesn't allow me that accuracy, so I'll share the link: http://mscure.aussieblogs.com.au/

This video that she shares is also absolutely fantastic: http://www.youtube.com/watch?v=erAgu1XcY-U - SUBTITLES AVAILABLE IN ENGLISH AND SPANISH
(to activate, click on the first icon on the right bottom of the video)

A big hug full of faith and hope for all of you!

Carla
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Re: Welcome to ThisIsMS

Postby lyndacarol » Thu May 30, 2013 5:37 pm

Welcome to ThisIsMS, Carla. Thank you so very much for sharing your story. Your English is very good; your explanations and vocabulary are wonderful – I would be so happy if I could speak a foreign language half as well as you speak English!

I commend you for helping your husband follow Dr. Wahls' diet. I know it is not easy to do. I believe her diet helps because it greatly limits any food that becomes glucose in the bloodstream and so ultimately reduces the amount of insulin that the body produces in response to that glucose. I believe that excess insulin starts the MS cascade.

As for vitamin D3, I encourage your husband to use the sun as a natural source. I have the impression that there is lots of sunshine in Portugal – 15-20 minutes of daily sun exposure on the skin, without any sunscreen, should be a good source. This method bypasses any problems with absorption in the gastrointestinal tract.

Thanks again for posting your story; it gives hope to all of us.
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Re: Welcome to ThisIsMS

Postby CyndiN » Sun Jun 02, 2013 4:15 pm

Hello!

My name is Cyndi and I have been sort of diagnosed with MS. I have lesions on my spine, tremors, numbness, inconsistent weakness in arms and legs, vision comes and goes, usually just in my left eye. Sometimes I lose my ability to use my legs, only to have it come back, sometimes in the same day. I have to concentrate on where my feet go on the ground, otherwise I tend to veer to the left when I walk...I also have herniated discs and hemangiomas on my spine. Plus, I have Fibromyalgia and Lupus. The drs are saying "Probable MS" since my MRIs show the lesions on my spine. I do not have insurance so I can't afford the neurologist the local clinic says I need to go see...ugh! :cry: I also had a rare reaction to Neurontin that is consistent with someone who has MS. SO...the dr told me to learn all I could about MS and go from there. I have a whole mess of drug and food allergies so they only prescribe Prednisone when I am having a lot of hand tremors or muscle spasms. So here I am, kind of freaked out with yet another autoimmune disease and wondering where to go from here. I also take medicine for depression (stemmed from a lifetime of being physically and emotionally abused). The antidepressants help some, so that is good! :smile:
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sun Jun 02, 2013 4:32 pm

hi and welcome to TIMS, Cyndi!
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Re: Welcome to ThisIsMS

Postby KEW » Mon Jul 08, 2013 11:08 pm

Hello my name is kim I am 46 and was diagnosed at age 28 with ms after I had optic neuritis. Final diagnosis after mri and spinal tap treated for 3 years with betaseron copaxone and no good lost health insurance at 29 no treatment till age 45 again. Current status chronic progressive cant take tysarbi testeg positive for virus which rules me out as candidate now suggested to take tecfedira although doc said not sure it will do anything. I had significant attacks when I was without insurance and only treatment was iv steroids. Have been through some treatments for symptoms but always have side effects that stop the drug latest side effect stevens johnson syndrome HORRIBLE!! pain fatigue difficulty walking balance issues cognitive and speech issues on and on latest sleep apnea not obstructive but central and i stop breathing on average 85 times a night average of 7 hours sleep a night anyone have any info on this as related to ms? And I am glad to have found this site my first time exposing myself to any online forums disscussions and it looks like a winner to me.
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Re: Welcome to ThisIsMS

Postby NHE » Tue Jul 09, 2013 1:02 am

KEW wrote:sleep apnea not obstructive but central and i stop breathing on average 85 times a night average of 7 hours sleep a night anyone have any info on this as related to ms?


Hi Kim,
Welcome to ThisIsMS. Are you using a CPAP or BiPAP machine? I'm not familiar with a link between MS and sleep apnea, but it doesn't surprise me that they could be linked. Here are a couple of papers that found a relationship between the two.

Sleep-disordered breathing in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/22895593

Obstructive sleep apnea is associated with fatigue in multiple sclerosis.
http://www.ncbi.nlm.nih.gov/pubmed/22183937

Multiple sclerosis with medullary plaques and fatal sleep apnea (Ondine's curse).
http://www.ncbi.nlm.nih.gov/pubmed/8925593
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Re: Welcome to ThisIsMS

Postby job » Sat Aug 10, 2013 5:59 am

Hi I was recently diagnosed with MS and was engaged to get married inSeptember....However on coming to know about my disease,my fiance left me after 6 months of our relationship...is it fair since as of noe none of me physical activity has got affected and no one knows about the future right??
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Re: Welcome to ThisIsMS

Postby jimmylegs » Sat Aug 10, 2013 6:28 am

hi :) ms sucks, breaking up sucks.. but if you want to look for a silver lining to the situation, i think you will be able to find it..
not to mention you are here working on an understanding network. welcome :D
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Re: Welcome to ThisIsMS

Postby DazedAgain » Wed Sep 18, 2013 9:53 pm

Hi,

I am glad that communities such as this exist to get info and support!

I was diagnosed with RRMS in May of this year. My symptoms range from difficulty walking (but still unassisted), sensory issues like tearing sensations in hands, the feeling that burning embers are falling on my scalp, memory issues and other cognitive problems,and constant fatigue. I just turned 43. I am on Betaseron.

All of this is still new to me and everyday there is something new. My latest is feeling like an elephant is standing on my hand. Ouch.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Fri Sep 20, 2013 5:46 am

welcome to the forum DA :) we can all relate, you're in good company!
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Re: Welcome to ThisIsMS

Postby wisernow » Sun Oct 27, 2013 10:43 pm

Hello, new here. I have had symptoms for about 20 yrs. My Mri 20 years ago was negative, so I have been treated by symptoms all this time. Until, now, I saw a new Dr who wanted to do an MRI. I have multiple lesions at the brain stem and now they have done MRI of cervical spine. just wondered if anyone has been through something like this... years of symptoms, and not diagnosed?
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Re: Welcome to ThisIsMS

Postby MSandI » Thu Nov 07, 2013 7:26 pm

I love this site, I only stumbled onto it a couple of days ago. You all are so very informative. Will share as time goes by.
Thanks
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