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New to the board

Postby Leticia » Mon Mar 17, 2014 3:18 pm

I have never posted on a message board and live in a small town and feel like I am at a loss to help my mother. She has tried copaxone and other numerous drugs to treat her MS. She either became allergic to them of had terrible reactions. When i took her into the emergency room for the reaction to the Copaxone they treated her like she was there to get free drugs. I am so tired of rude hospital staff and doctors offices. She is currently on Tecfidera and her neurologist was really pushing the Tasabri our last visit. She is against taking the Tasabri because she knows people who died taking it when the drug came out. The neurologist was so rude to her and wont give her a referral to to University of New mexico to be seen. When I asked him to give her something for the nausea and stomach pain he said " I'm a brain doctor, I don't deal with the stomach"
She and my grandmother have purchased a home up there to get away from out HOT HOT west Texas summers. I don't understand anything about this disease except what I try to read on the internet. Sharing her time between two states shouldn't she be able to see another doctor somewhere else?
I want to do anything to help her and have even given her cannabis to help with the pain. She was diagnosed in 1996 and she isn't in a wheel chair to much but doesn't leave the house really but when she does she has to use a cane. Any suggestions or comments would be very helpful.
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Re: New to the board

Postby THX1138 » Mon Mar 17, 2014 3:39 pm

Leticia, welcome :) :YMHUG:
You will find caring, knowledeable people here.

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Re: New to the board

Postby Leticia » Mon Mar 17, 2014 3:51 pm

Thank you so much!!! THX1138
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Re: New to the board

Postby THX1138 » Mon Mar 17, 2014 3:57 pm

Leticia, one good place to start looking on this site is:
http://www.thisisms.com/forum/regimens-f22/topic2489.html
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Re: New to the board

Postby want2bike » Mon Mar 17, 2014 6:30 pm

Let Dr. Bergman explain the problem.

http://www.youtube.com/watch?v=zGmyUppmt-g
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Re: New to the board

Postby Leticia » Mon Mar 17, 2014 7:16 pm

Thank you want2bike!!
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Re: New to the board

Postby centenarian100 » Mon Mar 17, 2014 9:34 pm

Hey Leticia. welcome to the board. It sounds like your mother's doctor is a jerk. She should probably get a second opinion
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Re: New to the board

Postby Leticia » Tue Mar 18, 2014 6:05 am

Yes centeraian100 he is. She is trying to have our small town OBGYN get her the referral to UNM. We live in a town with a oil boom happening and it has dr office overcrowded and dr overloaded. They also just said she has fibromyalgia and lupus. She keeps getting the butterfly rash on her face but insurance denied to pay for the lupus panel. Its just a big mess. She hasn't ever fully recoverd from her last flare up either. Prednisone only seems to help for a little while and I know its not good on her body. Any suggestions are helpful. I know im reading alot on anti-inflammatory diets and vitamins.
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Re: New to the board

Postby cheerleader » Tue Mar 18, 2014 6:59 am

So sorry your Mom is going thru this Leticia! It must be so frustrating to watch her doing badly, and to have uncaring doctors.

If you can find a good general practitioner, or someone who on her side, it will help. Maybe that obgyn can help get the blood tests processed? That butterfly rash is a big clue...and she may indeed have lupus. You're right to try and get that blood test done.
Tecfidera is very hard on the stomach, and there might be a more natural, less toxic way to pursue the action of that drug-using a supplement called Protandim, or simply curcumin, milk thistle and green tea extract.
https://www.facebook.com/notes/ccsvi-in ... 4812867211

Get her on an anti-inflammatory diet. Cut back on sugar, transfats, processed foods. Make sure she is getting lots of fresh, organic fruits and vegetables. Some supplements to consider are omega 3 oil (fish or flax) and vitamin D. If she is able to move, keep her exercising. Swimming is good, so is indoor stretching or yoga (if it's too hot out).
Hang in there!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: New to the board

Postby lyndacarol » Tue Mar 18, 2014 9:19 am

Welcome to ThisIsMS, Leticia. So sorry for the situation that brings you here. You have found a group of new friends, who are good listeners and who want to help in any way we can.

Since you asked for any suggestions or comments, I feel free to offer mine.

Cheerleader has offered excellent advice: First, find a good, compassionate general practitioner for your mother (if you have to call a DOZEN!); Tecfidera is very hard on the stomach (there are MANY people who post here on the Tecfidera forum better and will have suggestions; Tysabri, in my opinion, is a dangerous drug – our member HarryZ has important info on it); diet is the most important – we have control over what we eat! Your mother needs good nutrition; if nausea and stomach pain prevent eating, perhaps drinking juiced vegetables are a better way of getting nutrition into her.

Like you, NO ONE really understands anything about this disease – even the "experts." We are willing to share our experiences and our ideas – so ask any questions you might have. We admire your desire to help your mother – even posting on a message board for the first time. She needs an advocate, a strong person who will be on her side – I think that is you, Leticia.
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: New to the board

Postby Leticia » Tue Mar 18, 2014 10:12 am

Thank you!! Its really nice to be able to communicate with people who are in the same situation. Im going to really a start working with her and my grandmother on all of us changing our diets. Im so glad I found this board!!
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Re: New to the board

Postby CaliReader » Wed Mar 19, 2014 11:05 am

If the neuro won't work with her, she should make an appointment with a good family doctor, bring copies of her mri scans and ask to be referred to UNM for neurology.. The family doctor might also be able to help with the stomach issues. I never took Tecfedera, but there are some suggestions here on thisisms.com for Tecfedera stomach side effects under medications, Tecfedera.
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Re: New to the board

Postby Leticia » Wed Mar 19, 2014 1:39 pm

Calireader we are trying to have a OBGYN that treats "everyone" in our town do the referral so crossing my fingers they get it done. She hasn't had a MRI in a while. :( (like 5 plus years) but thank you !!!ill start trying to get all her labs and mri from hospital.
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Re: New to the board

Postby THX1138 » Wed Mar 19, 2014 1:44 pm

Here is a good video about carbs and brain health:
'Grain Brain', an intimate discussion with Dr. David Perlmutter

https://www.youtube.com/watch?v=qgu7wiDRaLU

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Re: New to the board

Postby lyndacarol » Wed Mar 19, 2014 5:08 pm

Thank you for finding and posting this EXCELLENT video, THX1138.

This should be very helpful to Leticia with its recommendations for diet. I hope Leticia's mother likes eggs, cheese, avocado for breakfast.

But there is good information for all of us – I recommend this video for everyone. Particular names came to mind (and you know who you are!) when he spoke of nutrients, saturated fats, vitamin D3, something for everyone.
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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