Dazed and Confused

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Dazed and Confused

Postby Jenmen0304 » Thu May 16, 2013 7:22 am

Good morning from NYC! I am a newbie to this forum, having stumbled upon this wonderful forum recently. (AND SO GLAD I did!)

Let me tell you a little background. I am 35 years old. I have a wonderful husband and 2 beautiful daughters, age 3 years and 5 weeks. Yes stress is bad for me, but wouldn't change the joy motherhood for anything. The neurologist wanted to put me on Avonex last year, but I decided to have one more child before I started any meds, and then I had my tubes tied.

My official diagnosis of RRMS was Mothers Day 2012. My symptoms are tingling in my arms and toes, occasional burning in my thighs, shooting spasms in my back ( which is extremely minimal). So basically am in my early stages. Cognitively I feel that my brain could work a little better, as I am a little forgetful- but isn't everyone?

After giving birth to my second daughter, my symptoms are now a daily pain in the butt. I had heard postpartum they would appear, due to them lying dormant for 9 months- it was wonderful!

So here I am. My neurologist said I need to go on meds ASAP. He told me that in a year since I had seen him, there is a new one he wanted me to try-Tysabri. I tested negative for JCV and they want me to start.
First choice-Tysabri
Second-Avonex
Third- Tecfidera

Upon researching all of them, I am not comfortable at all with any of them at this point. I have written a few times on here and have gotten great advice.... And have started a full supplement regimin of D3, D2, DHA, b12...

I have changed my diet (I loved sweets until I found out this may cause further episodes) and will go back to excersising when given a doctor ok (just had c section).

Guess my question to the group is: Which way to go? What meds are working for you?

I find going on Tysabri without any previous meds is aggressive, but why would he start me on this first?

I have heard the side effects of Avonex is dreadful. Yes everyone is different.

My neurologists PA told me Tecfidera is diarrheal for 6 months and doesn't recommend. I am a Tearcher and cannot see running to bathroom every 5 minutes.

My neighbor gave me the name of Dr. Zamboni with CCSVI. That's a whole new ball game.

Read about copaxane (sp?) and heard some good results.

I want to go on something if only to slow down progression.

I'm confused. I'm on brain overload researching all those meds. Frankly I have given myself a headache. If they do not know what causes MS, then how do they know how to treat it?

I am going to my neurologist tomorrow. I would like a full blood work done to find my baselines. What am I lacking in my cellular count that I need to correct?

Can any of you help me with any questions that I should ask because when I sit in front of him, my mind goes blank. I would like to go in with an informed list.

I thank you in advance and look forward to your suggestions xoxo

Hope everyone is smiling at some point today :)

Jennifer
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Re: Dazed and Confused

Postby jimmylegs » Thu May 16, 2013 8:49 am

hi there, had you caught the responses on your earlier thread? post209331.html#p209331
lots of detailed info there, just on nutrients though, no drug info. there is a section on bloodwork and a link out to research abstracts that you can print to support your request at the neuro appt. let me know if you have any related questions :)
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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Re: Dazed and Confused

Postby Jenmen0304 » Thu May 16, 2013 9:55 am

Jimmylegs I had missed the link but I just read it- I am going to my neurologist tomorrow and asking for complete bloodwork!

Thank you!
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Re: Dazed and Confused

Postby jimmylegs » Thu May 16, 2013 10:26 am

good stuff! you're welcome :)
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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Re: Dazed and Confused

Postby jimmylegs » Thu May 16, 2013 10:27 am

drop us a line after the appt, let us know how it went!
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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Re: Dazed and Confused

Postby lyndacarol » Thu May 16, 2013 5:46 pm

Jenmen0304 wrote:So here I am. My neurologist said I need to go on meds ASAP.
...
I have changed my diet (I loved sweets until I found out this may cause further episodes) and will go back to excersising when given a doctor ok (just had c section).
...
If they do not know what causes MS, then how do they know how to treat it?
...
I am going to my neurologist tomorrow....Can any of you help me with any questions that I should ask because when I sit in front of him, my mind goes blank. I would like to go in with an informed list.

It is my opinion that you will find more benefits with the diet change and exercise than with the meds that your neurologist wants to prescribed.

We think alike: if they do not know what causes MS, I believe that they CANNOT know how to treat it!

As for your appointment with your neurologist… I encourage you to collect your thoughts and write down your questions before you see him. Take your paper filled with questions to your appointment.
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: Dazed and Confused

Postby Jenmen0304 » Fri May 17, 2013 2:12 pm

Thanks all for your words of knowledge and experience.

I signed the dotted line today for Tysabri.

When I asked why they were putting me on such an aggressive med right off the bat, they told me it is because I have a lesion on my spine. So if I keep growing them on my spine, one day I may not walk.

The Tysabri forum I joined there were actual patients that had lesions disappear, other patients shrank theirs.

I will take the good with the bad. If I can live the life I am leading now forever, then I will be one happy girl.

On to one more MRI and another blood test to make sure I am JCV negative, and I begin treatment in the next couple of weeks.

Pray for me too!!!
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