This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello,

I am 37 and been diagnosed with ms about year and a half ago. It took over a year to diagnosed with 3 Nero opinions. All came up with ms, I suffer from tiredness, dizziness, numbness, swallowing issues , pain, lots if body pain, memory loss, tremors, handwriting has changed drastically, ms hugs, losing feeling in limbs, seeing black spots and this is just things off the top of my head. I just started avonex this last Friday night, that was a mentally hard one! I pre medicated and sat. Felt pretty horrible, today Sunday I'm feeling better. I also have a low vitimain d, I take 50,000 iu 3 times a week, I struggle with that often. I had a low b-6 level that is now maintained with supplement. I have thyroiditis that my endocrinology dr says can be caused by ms. I have so far had one wing removed. I am anemic, tomorrow afternoon I get infusions of iron, which is better than a transfusion. I was diagnosed by process of elimination and a brain MRI. Foci in the bunches, lesion in white matter of brain. Ruled out any other possibilitys of brain lesions and other symptoms. I have has every test under the son. I have gotton much worse in last couple year, ms is day to day in my life reminding me what I have been dealt:( has anyone else dealt with anemic with ms? Thyroid issues ? B-6 and d vitimain difficiacys ect . I yeah wanted to mention, Fridays avonex was only 1/4 dose, this Friday 1/2 dose , the 3/4 dose then full!! Yikes ! And then changing to pen! Anyone have that experience ? Thank u and god bless:) one more thing I would like to add, I see alot of people on this site that push the natural way by diet, supplements, remedies ect. Which I think is great if that works for u. I tried for over a year and have gotten at least 40% worse by listening to those ideas. Last option was avonex, I have realized that there all kinds if levels and Mis diagnosing if ms. I feel that mild cases can be treated more at a natural level , why other cases can not and need to be addressed with an aggressive
Approach. I wish I would of done that route as well as my changes in lifestyle. That is just my experience, it does not work for everyone.

Hi Cristy,

I am relatively new to this too, 3 years in without a whole lot of damage so far...knock on wood. I'm totally unqualified to say this but from your list of symptoms and speed of your progression, it just strikes me that you might have CCSVI. I don't think of CCSVI in the same way that everyone else here does...I think CCSVI intervention reduces nerve/medulla compression that can cause a lot of symptoms that are attributed to MS and which happen to be on your list. It's totally unproven but there you have it...yet another theory. You might want to look into CCSVI angioplasty or atlas realignment. I don't believe taking Avonex will interfere with either of those therapies. If interested, you'll of course want to read a lot of the mainstream information in the CCSVI forum. Details of my unproven theory about nerve/medulla decompression are here...
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21485.html
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21488.html
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic21502.html
I've asked Dr. Sclafani, a CCSVi specialist who posts here, about this theory but he hasn't responded. Who knows what that means?!

Best of luck with your ramping up of Avonex. So far I've managed to stay away from DMD's but I can imagine it's a bit of an ordeal. My heart goes out to you.

hi and welcome

curious which supplements you have tried for natural approach, and if every test under the sun means that you have had level test results for all of the various supplements you have tried?

specifically are there any other nutrient tests on your file besides vit d, vit b6, and iron? based on your list of symptoms i am particularly curious to know if you have tested serum magnesium and serum zinc.

also, how long have you been taking the high dose d3? are you aware that high dosing d3 has possible consequences including magnesium depletion?

i personally have had low d3, low ferritin, low b12, low magnesium, low zinc, low uric acid, all these are on file. also suspected but not tested low vit e etc.

also curiou

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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, Cristy. As I read the list of your symptoms, it seems that many involve the muscles – swallowing, tremors, MS hugs, feeling in limbs. Since you see an endocrinologist, I wonder if you have ever discussed "insulin resistance in skeletal muscles"?

You wrote that you have had every test… I wonder if you have had a "fasting blood insulin test" – it is not routinely done; it has only been available since about 1960; the optimal test result is 3 UU/ML or lower –– an elevated level indicates insulin resistance. If your cells are insulin resistant, energy is not getting inside and could contribute to general tiredness as well as the muscle problems.

I encourage you to work with your endocrinologist. I think the fundamental problem of MS falls in his area of expertise.

Hello:) and thank you so much for your posts! I will for sure look into all if your advise and theory's I have not had the fast test, I have not heard of that. I'm thinking I need to find a new Endo dr. He really just touches on my thyroid. Which is a small % of my health issues. I have been tested for all kinds of levels in my blood. Metals as well as all acids, supplements ect. As to answering the natural route, I have been seeing a medical certified massage therapist and dietitian. I see her twice a week, I have formulations of oils, rain baths, cleanses, supplements, whole foods, light therapies, in hauling smells, rubbing oils on my wrists to rebuild damage ect. I have tried all of it, I never wanted to go on these harsh therapies but like I said and believe some ppl do:( we have no choice. I wish I had a mild case, but I don't. My mother in law has had ms for 15 years and treats it with her diet exact to mine. She has had no flares for years, she is lucky. I had my first iron infusion yesterday, went well its one of 12 treatments tho..... I did not know that. Again thanks for your kindness

We are always here for you, Cristy. We don't have all the answers, but will always try to answer your questions.

I am not surprised that you have not heard of the "fasting blood insulin test." It is not routinely done; you will have to request it specifically. It is one of the least expensive blood tests (if your insurance won't cover it). It was developed in the 1950s by Rosalyn Yalow and her colleague Berson; she even received a Nobel Prize for discovering how to do this blood test. I believe she died last year. If you do find a new endocrinologist, "insulin resistance" would be a good topic to discuss with him. But this insulin test does not REQUIRE an endocrinologist; your GP or any physician can order it.

I do think that in some people MS can be treated with diet. There are several books out there by people who have done just that. The most dramatic case of improving MS symptoms with diet and exercise is the story of Dr. Terry Wahls and her amazing improvement: http://www.TerryWahls.com

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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?"