another confused MS sufferer

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another confused MS sufferer

Postby sophie447 » Wed Aug 08, 2012 3:17 pm

Hello everyone,

How wonderful it is to have found this board! Loads of useful info for someone so desperate for it. ARGH... why is it so hard to find interesting, reliable, and truly useful info out there? Anyhow, no point complaining!! I will first apologize in advance for my 'incorrect' English. French is my mother tongue.

I will introduce myself. I am a 48 yo woman and have not been diagnosed with MS, but sure am wondering what they are still debating! I had first symptoms sept 2010. They were mainly sensitory, numbness in legs and poor balance. MRI showed 3 lesions on the dorsal portion of my spine, apparently in locations consistent with the symptoms I was experiencing. Nothing on my brain then. Was treated with steroids and doc wanted to wait for any type of DMD, thinking more of CIS. No relapse so far. MRI 1 yr later shows 2 new lesions on my brain, but 2 docs (neuros) say to still wait and not worry. Still dont recommend DMD's. One seems to think that more effective drugs are no more than 1-2 years away, and given the low effectiveness of the current ones (40%) , it's not worth the bother considering the slow changes I am experiencing I guess.

At the same appointment, when I complained of difficulties with my vision, funny, weird feeling. As if it was hard to 'merge' into one the images from both my eyes. The neuro examined my pupils reaction to light and says: damage to optic nerve. Nothing more. I fell soooo stupid today for just leaving left the office without asking again what his opinion about the whole thing was at that point.

A week later, as I started thinking about the VERY real possibility that the 1-2 years before new drugs he's hoping for could easily turn into 4-5 yrs, panic set in and I decided to start taking Copaxone. The neuro obliged and seems to think it was his idea :roll: !!! That was only 2 weeks ago, but I am already having second toughts. Must be related to how much fun it is!!

No point loosing one's sense of humor!

Does anyone feel like commenting. I would very much value your input.

Also, is there any book you would warmly recommend reading to better understand MS. I mean, beyong the usual: MS is a degenerative neurological ..... bla, bla, bla, 10 lines.

Thank you in advance.

Sophie
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Re: another confused MS sufferer

Postby lyndacarol » Wed Aug 08, 2012 4:43 pm

Sophie, welcome to our community.

Book? Start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

From this day forward, I encourage you to eat a healthy diet (a good idea whether or not one has MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- removing all sugar (including beer, wine, etc. which have sugar), all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. I suspect that Fatty Liver Disease is also involved. Diet is important. You may find the account of Dr. Terry Wahls and her dramatic improvement interesting (http://www.TerryWahls.com).

We are glad that you found us; we look forward to your participation.
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Re: another confused MS sufferer

Postby mazza » Wed Aug 08, 2012 10:13 pm

Hi Sophie,

The book I have found most helpful is "Overcoming Multiple Sclerosis" by Professor George Jelinek, a doctor who himself has MS.

It has been almost 15 years since I got the diagnosis and have avoided DMDs so far. I know we are all different but for me the progression has been very slow.

Welcome and all the best.
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Re: another confused MS sufferer

Postby vesta » Thu Aug 09, 2012 1:24 am

Hi Sophie:
I have 32 years experience dealing with MS (and Drs) and some good ideas about treating MS without drugs including diet, energy therapies like osteopathy, acupuncture, self acupressure etc. Check out my site MS Cure Enigmas.net. I live in France now and translated the main paper into French you can find at SEP CCSVI ou Toxique.net (Doubtless there are grammatical errors, but hopefully I get the main points across.) I've found a simple neck massage pushing blood down towards the heart is enough to stop an "attack". You probably have an MS you can manage yourself. Take heart and try.
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Re: another confused MS sufferer

Postby sophie447 » Thu Aug 09, 2012 2:48 am

Thank you so much for the replies. It really helps. Will be getting the books. I really like all your suggestions. Maybe I jumped the gun way too fast!
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Re: another confused MS sufferer

Postby NHE » Thu Aug 09, 2012 3:08 am

sophie447 wrote:Thank you so much for the replies. It really helps. Will be getting the books. I really like all your suggestions. Maybe I jumped the gun way too fast!


There are more book suggestions in the Reading Nook forum.
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Re: another confused MS sufferer

Postby jimmylegs » Fri Aug 10, 2012 4:00 am

welcome to the forum, sophie :)

i personally do not take DMDs, and the only book i've read on ms doesn't really fit with my current approach so i won't recommend it (although it is on the book list in the reading forum)

if you are interested in ruling out any nutritional issues that are known to be present in the average ms patient, i can help you with that side of things.

i had a look at reasons for balance issues, found this on wikipedia:

http://en.wikipedia.org/wiki/Balance_disorder

Related to the brain and central nervous system

Brain related causes are less commonly associated with isolated vertigo and nystagmus but can still produce signs and symptoms, which mimic peripheral causes. Disequilibrium is often a prominent feature.
Degenerative: age related decline in balance function
Infectious: meningitis, encephalitis, epidural abscess, syphilis
Circulatory: cerebral or cerebellar ischemia or hypoperfusion, stroke, lateral medullary syndrome (Wallenberg's syndrome)
Autoimmune: Cogan syndrome
Structural: Arnold-Chiari malformation, hydrocephalus
Systemic: multiple sclerosis, Parkinson's disease
Vitamin deficiency: Vitamin B12 deficiency
CNS or posterior neoplasms, benign or malignant
Other - There are a host of other causes of dizziness not related to the ear. Mal de debarquement is rare disorder of imbalance caused by being on board a ship. Patients suffering from this condition experience seasickness even when they get off the ship.
Motion sickness - a conflict between the input from the various systems involved in balance causes an unpleasant sensation. For this reason, looking out of the window of a moving car is much more pleasant than looking inside the vehicle.
Migraine-associated vertigo
Toxins, drugs, medications

most items on the list above have a zinc nutrition connection, even b12 deficiency. a b12 problem could be related to the spinal lesions, not sure about the brain ones, though (although i can recall at least one case study documenting brain lesions in b12 deficiency).

last time i had vision problems related to zinc deficiency, i didn't have my optic nerves checked, i just felt like i could see everything perfectly, but couldn't make sense of it. it was hard to drive because i couldn't relate what i saw, to the passage of time. so it was very difficult to tell if it was safe to cross an intersection, or change lanes on the highway. i did end up asking for a zinc test based on the reading i was doing at the time. i got my first serum zinc test, and it came back 8.6 umol/L, markedly deficient. when i corrected the zinc level, my vision issues resolved and have not returned. zinc is very important for the eye - the eye has a very high zinc concentration, and zinc is required for the body to utilize vitamin a (retinol).

Zinc and the eye
http://www.ncbi.nlm.nih.gov/pubmed/11349933

Nutritional effects of zinc on ocular and systemic physiology
http://www.ncbi.nlm.nih.gov/pubmed/6454715
"High concentrations of zinc are found in human ocular tissues and are closely related to visual function. When zinc levels are inappropriately low, results can include ocular birth defects, reduced ability to dark adapt, excessively low IOP, and optic neuritis."

if you want to read more about the nutrition approach from my personal perspective, here's a link: regimens-f22/topic2489.html

other than that there's lots of info in the diet and natural approach sections.
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Re: another confused MS sufferer

Postby sophie447 » Sun Aug 12, 2012 5:48 am

Hi jimmylegs,

Thank you for the reply

I have over the past weeks, come across many of your posts and they are very interesting. Altough I think I do want to continue taking DMD's in the hope that it might be one of the ways to preserve my health, I do realize that alone won't be enough. I am a person with a very active lifestyle, and wish to to keep it that way. I think your approach regarding vitamin balance makes a lot of sense. A mystery why doctor's won't usually first look there! If you feel like it, what are in order the nutritional elements you like to follow (I might have to ask in order... our medical system!!). I am going o the doctor's next month and will certainly ask for B12 and zinc tough.
If you don't have time, don't worry, I know I can look through your past posts and find what I need.
Sophie.
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Re: another confused MS sufferer

Postby jimmylegs » Sun Aug 12, 2012 3:16 pm

hi sophie, glad to hear you are finding info you can use!

if you are only allowed to ask for a couple of tests at a time, definitely make serum zinc one of the first ones. serum b12 is a good idea for an early vitamin to test.

serum magnesium and serum 25(OH)vitaminD3 would be good too, at the same time if you can manage it.

it's also good to know serum ferritin.

i could go on, but that's probably enough to freak the docs out with, at least for starters. i'll be back after i hunt down a big post i made a couple of years ago for 'mirry' - it had a bit of scientific rationale for all the various relevant tests.

hope that helps!
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