Question for all of you Potential MS patient

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Question for all of you Potential MS patient

Postby MandaPanda2888 » Wed Jun 06, 2012 10:09 pm

Hey everyone!
My name Is Amanda and Im 24 year old single mother. My son is 19 months old. Ever since my teen years Ive had at time debilitating headaches. After awhile they went away without many occurrences until I was about 19 or 20. I also started having numbness and tingling in my back which never went away fully but would go a long time without occurring from the time I was 20 until I got pregnant at 22 in Feb 2010. Starting about Feb of this year I had horrible shoulder pain. First the pain spread down my neck collarbone area was numb and had an itching sensation. Then it left the collarbone area and spread down my right arm. My right arm has now been numb and my thumb index and middle fingers are numb and tingling. Also Ive been having very severe headaches. The neurologist ruled out carpal tunnel and arthritis. I had an MRI done he mentioned something about some spots deep in the brain but wasn't concerned about them and then said and later showed my the inflamed area of my c-spine I think it was? either way it was on my spine.He thinks it may be MS and didn't really mention anything it may be. He is having me do a spinal tap next week. Aside from all this I feel very much pain in both hands something I would liken to what i think arthritis may feel like. I also am CONSTANTLY tired a few hours after waking even when I get a full 8 hours of sleep. Ive been having pain in my calves. Ive also had dizziness lightheaded, and when I have severe headaches I have blurred vision, slurred speech, and coordination problems. I have a horrible memory and sometimes cant even remember things that happened that were very important to me. I have always had concentration problems since I was a kid because I have ADD. Recently I had this strange RANDOM break out of what felt like the flu I had a low grade fever never hot over 101. And had EXTREME muscle pain so bad I could hardly walk. I thought I just had the flu or a cold so I took Motrin and it went away within a few days. Ive also realized that I have had problems with bladder. Like needing to go a lot and having trouble starting urination at times. I attributed this to having a child but realized it is a symptom of MS. I have recently started having pain like stiffness in my calves and ankles into my feet and I have EXTREME stiffness especially when I feel stressed in my neck and shoulders. Can anyone tell me if this sounds like MS? Im actually not too worried. I know its a hard battle and hard life but I feel happy to just have answers I have been living in pain for over a year now not knowing whats wrong with me. It has been very hard a depressing and not easy at all. I know I'll probably have more answers after the spinal tap. I also am planning on seein a neuro who specializes in MS in my area and getting a second opinion from her just to be double sure. Im just trying to learn as much as I can and get opinions as I do not know anyone with MS
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Re: Question for all of you Potential MS patient

Postby MandaPanda2888 » Wed Jun 06, 2012 10:55 pm

Id also like to add that I see floaters a lot like black specks in my eyes that aren't really there.
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Re: Question for all of you Potential MS patient

Postby gabriellelm » Thu Jun 07, 2012 1:25 pm

Hi Amanda, I experienced a lot of what you're experiencing, so reading your list of symptoms was kind of surreal. I was recently diagonosed with MS (in December) following an MRI that shower lesions and a spinal tap that indicated that the symptoms I was having are MS. Following your spinal, you should have more answers (of course), and I've found that this site as well as the National MS Society have been very helpful in answering questions. I know what it's like to have no one around to relate with on a personal level about this, so feel free to contact me via this post or through private message. Good luck!
"Be happy while you're living, for you're a long time dead." Scottish proverb.

DX in Dec. 2011, Rebif x3 per week.
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Re: Question for all of you Potential MS patient

Postby MandaPanda2888 » Fri Jun 08, 2012 12:42 am

Thank you for your input Gabrielle. It is very difficult being in limbo land with no answers. Some days I feel like this has to be what I have and other times I think they are going to say its Not and I'm going to be back at square one wondering what's wrong. Then I'm back hoping its not something even worse. I thought for sure I was going to have a brain tumor because I had no idea had neurological diseases worked. That is actually a relief that it isn't a brain tumor. But wouldn't say I'm happy with this possible diagnoses,
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Re: Question for all of you Potential MS patient

Postby FLJhawk » Fri Jun 08, 2012 2:43 pm

While you are awaiting a defninitive dx, at least get started on a good MS diet. Doing things now, while you are in the early stages of this potential disease, will give you the best chance to minimize progression and keep your healitier longer.
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Re: Question for all of you Potential MS patient

Postby MandaPanda2888 » Fri Jun 08, 2012 7:31 pm

Would anyone be able to tell me what a good diet would be or point me in the direction of a good site? thank you
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Re: Question for all of you Potential MS patient

Postby tzootsi » Fri Jun 08, 2012 7:46 pm

Diet in a nutshell: Eliminate as much saturated fats as possible, eliminate dairy, eliminate as much gluten as possible (wheat, barley, rye), eat lots of veggies, nuts, seafood, fruit.

Here are some good websites:
http://www.direct-ms.org/
http://msrecoverydiet.com/
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Re: Question for all of you Potential MS patient

Postby MandaPanda2888 » Sat Jun 09, 2012 4:08 pm

So is soy milk ok? I love milk and cheese dairy will be hard.
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Re: Question for all of you Potential MS patient

Postby bartman » Sat Jun 09, 2012 4:58 pm

Sounds to me you have lyme disease. Read Dr. Burrascano's lyme disease guidelines and educate yourself about the controversy. And remember there is no test for MS, and lesions on an MRI can be from many different things including infection such a lyme. Many people are misdiagnosed with MS when they have lyme. Also, Lyme test are very inaccurate, known to have a 60% false negative rate. Also, most people have lyme and coinfections such as bartonella and babesia. they are all very difficult to treat and take a long time before you feel better
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Re: Question for all of you Potential MS patient

Postby MandaPanda2888 » Sat Jun 09, 2012 6:00 pm

I don't know I looked up symptoms to Lyme disease and that does not sound like me at all. But I guess you never know. I fit almost all the symptoms of MS. But only time will tell. It sucks having a neuro issue all the diseases associated with it ate very hard to diagnose.
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Re: Question for all of you Potential MS patient

Postby tzootsi » Sat Jun 09, 2012 7:12 pm

MandaPanda2888 wrote:So is soy milk ok? I love milk and cheese dairy will be hard.

Soy is not the best, since many are sensitive to it. It is also a legume (bean), which some feel should be avoided. For milk, rice milk and almond milk are good. Rice milk is very tasty, and can be used on cereal, in coffee, etc. There is also rice yogurt and rice ice cream if you can find them. Unfortunately, cheese is something to be eliminated in most ms diets.
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Re: Question for all of you Potential MS patient

Postby jimmylegs » Sun Jun 10, 2012 8:07 pm

chiming in here in case you want to check out my 'signature' links :) diet, supplements, and testing are key!
welcome to the forum :D
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my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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