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Hi

Postby Janine » Sat May 19, 2012 11:30 am

Hi all, I have come to join you as after many years of symptoms coming and going I now believe I may have MS, I am due to see a Neurologist after my ENT specialist decided that this was necessary after a vertigo attack last year left me with cognitive problems.

Here is a quick run down, I think I am right to be very suspicious and just want solid answers now.

-Possible Labrynthitis diagnosed -1995 due to dizziness/balance problems and 'cloudiness' dream like feeling (brain-fog), sometimes feeling of numbness inside head, hearing difficulties and tinnitus yet ENT say I hear fine.

-1-2 years ago I had problems with blurring in centre of field of vision where I am looking (but everything around it can be clear) was noticeable when reading, found I couldn't clear vision to read, I find i difficult to concentrate on written word for long.

-numbness (Face, tongue, fingers, feet) and tingling sensations (bladder area, buttock, fingers, feet) for few years now, mentioned it to doctors but was dismissed again and again

-After vertigo in 2011- confusion, lack of concentration, memory problems when I used to have very good memory, inability to spell correctly on keyboard - what I think is not what i type, problems with speech-slow and slurred although getting better, slow thinking of what I wanted to say, trying to find the right words.

-Sometimes find I try and look in one place but feels like eyes are flicking to the sides to look elsewhere, hard to concentrate on what I want to look at so I have to close them.

-shooting pains in R. arm, cramps and spasms in hands. (last year or so) also find sometimes I can't hold small objects easily, like tweezers, pen, or do fine work or write.

-Sometimes can't tell if I have stopped peeing and urgency catches me out, sometimes I pee really really slowly (sorry if thats TMI)

-I get depressed and irritated easily due to feeling like I can't do what I want without the fatigue/weakness/dizziness getting in the way of what I need to do.

-Two weeks ago I woke to what I thought was a painful arm due to sleeping funny, 1 week later, still in pain-around joint and shooting pains, weakness and inability to use it, can't bend or straighten it without pain or difficulty

I have hypermobility, have acute joint pain and have suffered night sweats for approx. 8 years. I am 38 years old have two grown up children, 2 dogs and a wonderful Partner :)

This is what I will be telling the Neuro about. Would love some opinions, its not scaring me after everything I have read, but I struggle with not knowing what the hell is going on!

Janine x
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Re: Hi

Postby want2bike » Sat May 19, 2012 2:36 pm

Best to find a holistic doctor. All you neuro will do is give your disease a name and prescribe some toxic drug. Find someone who will determine what is causing your problem and get rid of it. There are many things in the enviroment today which make us sick. We have to find out what they are and get rid of them.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu

http://www.youtube.com/watch?v=trWTCEIP ... re=related

http://www.metacafe.com/watch/538419/ho ... in_damage/
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Re: Hi

Postby lyndacarol » Sat May 19, 2012 2:48 pm

want2bike – The same Dr. Mark Hyman who appears in the first link you posted has written a book, The Blood Sugar Solution, which I recommend for its emphasis on glucose and insulin as the big players in diabetes.
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: Hi

Postby MarkLavelle » Sat May 19, 2012 3:05 pm

Janine wrote:This is what I will be telling the Neuro about. Would love some opinions, its not scaring me after everything I have read, but I struggle with not knowing what the hell is going on!
It does sound like you should see a neurologist, but the vision problems should be checked by an ophthalmologist. Neuros generally don't have the right tools (or experience) to diagnose vision problems. Also, some of the vision issues you mention are not typical of MS at all.

You'll get lots of diet & supplement advice in this forum, but I would take it all with a grain of salt :wink: (and never take mega-supplements without checking with your doc). Everyone owes it to themselves to do what they can to stay fit, but that just means being reasonably active and eating reasonably healthy food. Highly 'prescriptive' diets rarely have any hard science to back them, and can even cause health problems...

RRMS dx 3/3/11; Copaxone since 12/1/11
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Re: Hi

Postby Janine » Sat May 19, 2012 3:13 pm

Thanks for the replies so far.

I saw my optician after the vertigo and because I had the previous vision problems, I also have a lazy eye but that has been known for some years.

I don't over-do supplements anyway, have tried various things in the past with little effect, I try to eat reasonably sensibly, I work, but trying to change depts so its easier on me where i am now is just a killer but I have no choice.

The ENT consultant is happy with me seeing the neuro due to the after-effects of the vertigo, it scared the hell out of me at first, so I don't know whether I've just adapted or it is actually getting slowly better, but I do know my short term memory is terrible
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Re: Hi

Postby jimmylegs » Sun May 20, 2012 5:26 am

hi janine welcome to the forum.

i can really identify with your cognitive issues. for me it turned out to be zinc deficiency. ms patients are known (in the research, not so much in practice) to have poor zinc status. many of the symptoms you describe have a zinc connection. "Nearly 100 different enzymes depend on zinc for their ability to catalyze vital chemical reactions." suboptimal status can therefore manifest itself in a wide variety of ways. two things i've noticed in the labwork since fixing the zinc issue: uric acid, typically low in ms patients, normalized. also, ability to absorb oral vit d3 tripled. other than that, the cognitive issues resolved, whew. the vision and tinnitus you mention could also have a zinc connection.

because you mention hypermobility, i'm sending you these links to recent posts of mine in response to new members with EDS or family with EDS:

chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19807.html#p190867
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic19914.html#p191611

not sure if you can connect any of that but either way, the relevant questions are the same - what supplements have you already tried? can you describe your reasonably good diet? have you ever had any nutritional bloodwork done? if you like we can get into detail and ensure your nutritional status is optimal, and then figure out what you have left to deal with going forward.

again, welcome to the forum :)
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Re: Hi

Postby want2bike » Sun May 20, 2012 7:23 am

Diet is the key to all healing. Dr. Swank did a 50 year study showing he can stop the progression of MS with diet. The medical community do not believe the study because there is no money in diet. Before you do the drugs understand a study was done in England showing people taking the drugs did worse. These doctors and their drugs are the third leading cause of death in our country. It could be very harmful relying on these doctors to make you well. Only the food you eat will do that.

http://www.overcomingmultiplesclerosis. ... gram/Diet/

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://www.healingdaily.com/Doctors-Are ... the-US.htm
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Re: Hi

Postby Janine » Tue May 29, 2012 7:11 am

Thanks I will have a look into some of the links provided.

When I was diagnosed (properly through a Rheumy) they did some workup on nutritional imbalances such as iron, Vit D deficiencies etc. and all came back perfectly normal.

I try to eat fresh fruit and veg everyday if we can afford it

I go to see my GP about getting a neuro assessment on thursday as requested by my ENT. My vertigo still comes and goes as does the dizziness, balance problems, numbness and buzzing sensations, and fatigue plays a big part in my life (slept for 10 hours last night but still feel so tired-could have stayed there all day!) so we shall see :)
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Re: Hi

Postby jimmylegs » Tue May 29, 2012 2:00 pm

hi janine, here's a link to info on the meaning of the word 'normal' in labwork. it's deceptively reassuring. most people, whether sick or healthy, fall inside the 'normal' range.
read more here... chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic17004.html

if you have the actual results for your various nutritional tests i can tell you if you've had all the right tests done, and how your results compare to the 'healthy controls' zone within the 'normal' range. really hope you have had a zinc level done - that would be a very telling result.

if you care to send a 3 day diet diary, i can look for nutritional gaps. if you decide to do so, but don't feel like posting that info here, you can pm me.

ttfn!
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Re: Hi

Postby Janine » Sat Jun 02, 2012 8:45 am

My GP won't refer me due to my cognitive symptoms easing, memory test etc was normal, I didn't tell her everything as I am just starting to sound like a hypochondriac!

Can anyone shed any light on why my hands keep seizing up though? getting to the point whereby I can't even hold a pen or a kitchen utensil without it going into cramp mode :/ its painful and annoying
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Re: Hi

Postby jimmylegs » Sat Jun 02, 2012 9:22 am

no bloodwork? that sucks. can you get the tests done privately?

if not, one thing you can do is start working on optimizing your intakes of magnesium rich foods, analyzing your existing diet for magnesium content, being aware of environmental stuff that contributes to magnesium loss (stress, coffee, diuretics, exertion/sweating), and start shopping around for a magnesium glycinate supplement. also epsom salts baths (magnesium sulfate) may be useful.

http://www.whfoods.com/genpage.php?tnam ... nt&dbid=75

there's more, but go for the magnesium problem first. keep it simple and then slowly build.

for future trips to the doc and to possibly get better buy-in re testing, consider starting a daily journal. what you ate, what you drank, timing, how you felt, what your symptoms were that day, when, how severe, how much you slept, etc. it's much quicker for a doc to read something like that, and you don't have to worry about forgetting anything. if it's all carefully logged it will be more like a self study and not just another patient complaining.

also if you introduce changes to magnesium intakes etc, be very careful to note those as well. then you can review a few weeks down the road and see if your journal entries look the same each day, or different. just thinking out loud :) i have old journals but they're not anywhere close to as detailed as i would like!
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