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Old 05-25-2008, 01:35 PM #11
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Originally Posted by yeahbut View Post
Cat - I am one of those people who would like to know what is wrong with me, I hope it isn't MS for I don't want it!!!!!! I wish it was just low B12 and a shot once a month would cure me, but when my neuro says he believes I have MS 100% but the insurance company won't take that as a dx I get really frustrated!! I personally hate being in limbo ~ I want to know what is wrong with me - why is my face, tongue and right side of my body numb in places, why do I fall, why do I always get vertigo, why am I in pain? There has to be a reason and I want to know why.....

Please don't get me wrong - I am not slamming you - You are lucky that you don't care that you are in Limbo, I wish I could be like you.... it would be a lot less stress on my part and we both know what stress does to us.

This is a great place to come for questions and answers. I wish you the best, it sounds like we have a lot in common. Maybe you can teach me how not to want a dx!

I can not belive the insurance company will not except that as a diagnosis!! (actually I can but..) What right do they even have to question the doctor? I might be a little nieve here about this but Iam truly shocked! What more do they want??
I feel horrible for you It's not that I don't want to know, I do. Its just that since I have gotten my b12 level back up, well, I have felt pretty good for the last month. If I go through another period like several months ago trust me I will have anther MRI. I may not like to think about it but I am no fool.
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Old 05-25-2008, 01:40 PM #12
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Your doc is right and wrong.

You may very well have a B12 deficiency, and this could be causing your symptoms. If a B12 deficiency goes on for too long, your nervous system can be affected, and you may end up with peripheral nerve damage (and Paresthesia). In fact, that is one of the first things they should rule in/out when we present with MS-type symptoms.

http://www.b12patch.com/about-b12deficiency.html

The part that he/she is wrong on, is that we won't get symptoms bilaterally . . . that is not true. Numbness is one of my most prevalent symptoms with my attacks, due to spinal lesions. I will get it on one side OR both sides (either at the same time, or progressively affecting both sides over time).


Cherie
Thanks for answering Cherie,
I guess I was half hoping you all would be like "oh yeah your doctor is right" I was trying to kind of reassure myself. Like I said above, for now I don't have anything really bothering me. My eyes go blurry every now and then and my memory can be really foggy, but those are all b12 deficiency symptoms also. Now that my level is back up, if I ever feel as bad as I did over the summer I will get another MRI.

Thanks for all your help
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Old 05-25-2008, 02:15 PM #13
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I took b-12 thinking my numbness was just that..a deficiency. Nope.. lol. All of my symptoms are always, or always have been bi-lateral, but my right eye hasn't recovered the same as my left. They both went out at once, as well as my legs and hands. Most of the folks I spoke to with MS were always on one side, and it had me wondering if I had ms or something else. Although I'm being tested for Devics Syndrome just in case, my neurologist assured me that MS can indeed be bi-lateral.
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Old 05-25-2008, 02:17 PM #14
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Hi Cat

I am also one of the people who has symptoms on both sides and I am also dx'd B-12 deficient.

Some neuro's are still old school and need to be a little more aggressive with their thinking and treat the patient and not the disease.

Have you checked out the NMSS website or multi-sclerosis.org website for symptoms and explanations?

http://www.nationalmssociety.org/abo...oms/index.aspx

http://www.mult-sclerosis.org/mssymptoms.html

These two websites may help YOU understand in order to help HIM understand. Asking your doctor specific questions is the first step towards dx, but also knowledge is power (for you!).

It took a while for my doc to figure out the B-12 deficiency, but I now get monthly b-12 injections which has helped my fatigue, tingling a lot. I can tell when it's time for an injection.

Good luck. Keep us posted on your progress!
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Old 05-25-2008, 03:52 PM #15
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I can not belive the insurance company will not except that as a diagnosis!! (actually I can but..) What right do they even have to question the doctor? I might be a little nieve here about this but Iam truly shocked! What more do they want??
I feel horrible for you It's not that I don't want to know, I do. Its just that since I have gotten my b12 level back up, well, I have felt pretty good for the last month. If I go through another period like several months ago trust me I will have anther MRI. I may not like to think about it but I am no fool.

I agree with you totally - it isn't right that the insurance company can play my doctor but they do. I wish you the best as well, please keep us posted on how things go.

How did you get your b12 level back up? Shots or just vitamins?
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Old 05-25-2008, 05:06 PM #16
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hi cat,

i also have bilateral sx's.
but my worst is my left leg.
at one point a was tx'd for a vit B12 def and i felt better. but i still had my original sx's.

i agree that it's best to know what you're dealing with.
there are meds that are recommended now (5 approved) to help stop progression. getting onboard early may help with disability down the road.

try to learn as much as you can about MS.
you might even consider a 2nd opinion. and, consider an MS specialist.

i hope you don't have MS. but don't give up advocating for yourself.
keep us posted.
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Old 05-25-2008, 05:12 PM #17
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When you have to have an MRI, why not post and let us know? I always felt better knowing my friends were thinking of me while I had to do some nasty test. You may be surprised how nice a few cyber hugs can feel when you're afraid.



And hey, on Wednesday please join us on the Limbo Check in thread, okay? There are probably a lot of limbolanders hanging around this forum, we get together and keep each other up to date with what tests and stuff we're having.

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Old 05-25-2008, 07:06 PM #18
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I guess I spoke to soon when I said I was not haveing any weird symptoms. Has anyone ever had an aura, like a migrain aura? It starts out really small like a megapixel. Then is grows in an arch shape flashing colors in a triangle pattern. This has only happend to me about 5 times over the last 10 years. I never get a headach and it useually lasts about 1/2 hour. I have no idea if this is something that happens to people with MS. I should point out that one of the reasons for leasions (once again) was migrain disorder. Any thoughts on this?
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Old 05-25-2008, 09:23 PM #19
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I guess I spoke to soon when I said I was not haveing any weird symptoms. Has anyone ever had an aura, like a migrain aura? It starts out really small like a megapixel. Then is grows in an arch shape flashing colors in a triangle pattern. This has only happend to me about 5 times over the last 10 years. I never get a headach and it useually lasts about 1/2 hour. I have no idea if this is something that happens to people with MS. I should point out that one of the reasons for leasions (once again) was migrain disorder. Any thoughts on this?
Hi Cat, and welcome.

Yes, migraines can cause lesions in the brain. Sometimes they cannot tell whether lesions are from MS or other causes such as migraine, tiny strokes due to high blood pressure or cholesterol, or what the heck. I believe that normal perivascular spaces can also look like lesions, anyway that's what my neuro told me.

If they see lesions in a certain shape/size or in certain places in the brain, they are more recognizable as MS lesions.

I have "small scattered" lesions that are "nonspecific," in other words they could be MS--but they could ALSO very well be due to migraine or other causes. I remain undiagnosed after 9 years of (relatively mild) symptoms and have not been followed since 2003.

The visual migraine you describe is common--I had three of them over about six months when I hit perimenopause full blast (before then I didn't even know I was a migraineur!). They are not related to MS.

Migraine does NOT have to involve a headache--I never got headaches with my visual auras, though my whole family does (mother, sister, one or two of my brothers, and both of my children!).

Good luck with everything!

Nancy T.
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Old 05-25-2008, 10:38 PM #20
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hello and welcome
the numbness use to always effect just my left side, now its also attacking my right side along with my left side, yes it can be annoying, so can people who cant drive
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