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.
- Family Elder
- Posts: 5359
- Joined: 11 years ago
- Location: southern California
- Been thanked: 1 time
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.
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!
dx dual jugular vein stenosis (CCSVI) 4/09
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.
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.
- Similar Topics
- Last post
Dr Arata CA medical board license revocation proceedings
Last post by NHE « 4 months agoReplies: 4
Posted in Chronic Cerebrospinal Venous Insufficiency (CCSVI)by Cece » 4 months ago » in Chronic Cerebrospinal Venous Insufficiency (CCSVI)
- 4 Replies
- 928 Views
Last post by NHE
4 months ago