|
dermatologists or rheumatologists
Posted at: 2010-08-03, 15:49:52
|
|
Can anyone tell me which Rheumatologist or Dermatologist they are seeing in VIctoria and how would they rate this doctor.
|
|
|
vitamin D
Posted at: 2010-08-03, 15:48:28
|
|
How much if any vitamin D are you taking ? Have you been tested for a deficiency ? |
|
|
Postings
Posted at: 2010-08-03, 15:45:30
|
|
John I would hate to see this shut down, I don’t know about you but I was diagnosed before the www days and i had the Muscular Dystrophy Association to rely on with their limited knowledge. I always think of people newly diagnosed and needing help, there has to be contact to someone going through similiar problems. I agree it is frustrating , I don’t know why we don’t get any postings here. I would love to know what stage people are at. |
|
|
The Other Drug War
Posted at: 2010-08-03, 15:41:55
|
|
good article Frances, I also noticed that the US myositis sufferers are now getting large doses of Vitamin D, when I asked my doctor he said there was no such thing available here . I would love to know why, if it is beneficial then why don’t we have access to it yet.
Would you let me know how you are going ,? |
|
|
SUNSCREEN for DM
Posted at: 2009-12-11, 14:24:00
|
|
Further to this post, I have found a sunscreen that filters not only the sun rays but all environmental factors that can harm us. Eg, the computer and light sources like flouresecent lights.
We have Invisible Zinc and they make one for this problem that we should be using every day whether we are going out or not.
The one with Elle McPherson in the advertising. But make sure it is the environmental block.
Take care |
|
|
COME ON ANSWER SOME POSTS
Posted at: 2009-12-08, 16:03:51
|
|
When it all boils down we are the best help to one another while the doctors find out what is going on.
So can I just appeal to everyone to answer some questions that are posted here.
Doesn’t matter what you say, tell us what you are having for lunch. Tell us about your lifestyle, can’t we just talk among ourselves.? The best support is from other sufferers and the best way to gain knowledge. Some of us can’t go to meetings and depend on the computer so give some feedback. WHen I was diagnosed we didn;t have this opportunity and relied on a phone call from someone referred by Muscular Dystrophy. Come on there is strength in numbers. Tell us what you are doing or not doing for Christmas. How do you cope ? ANything will do. Look at all the topics with a big 0 in the replies, lots of views with no replies. What is the problem ? Tell everyone why you don’t make any comments. We can’t expect the medical community to keep up if we aren’t doing our own research.
Looking forward to hearing anything. |
|
|
Loss of Strength
Posted at: 2009-12-08, 15:54:51
|
|
Hi John, so you were in bed for 9 weeks without much exercise. That was bad on the hospital’s part as they should have made sure you kept moving. Even after surgery they usually get you up and moving around.
I don’t know for sure but I think you could get it back, depending on how much damage and how much energy you have now.
I suppose you should start slowly and do what you can. But anything can happen , I was told once that my back was bad from weak muscles and that has proved to be true. A lot of people are being encouraged to exercise now to regain strength so there is good hope for you.
Good Luck |
|
|
SUNSCREEN for DM
Posted at: 2009-12-08, 15:49:45
|
|
I am referring to the Outlook which we just received in the mail. Fall 2009 issue. A lot of information came out at the COnference . One really interesting thing discussed by a Dr.Andrew Mammen, he said that DM people need sunscreen at all times. That we get damage from the sun even though of course we don’t sunbake.
Just going to and from the car, or hanging the washing etc can bring on a flare. Not just a rash but a flare of symptoms. I was told to stay out of the sun which I do anyway but we are easily affected by light and can get symptoms from something as simple as sitting in the car. It is all good information if you haven’t already read it.
For us it means using sunscreen all year or a combined sunscreen moisturiser. I do wear long sleeves in the car but I should be covering up with SPF.
It seems they now know that people go into remission at certain times of year. Not cured but remission , So maybe the symptoms worsening at certain times of year is due to the weather and sun etc. |
|
|
sjogrens
Posted at: 2009-12-08, 15:40:23
|
|
I was diagnosed with Sjogren’s before the DM diagnosis and did not know why I had so many dental problems. I now see an oral surgeon who is very good and interested in our disease.
Have you read the book I think it is called ”The Sjogren’s Syndrome” Handbook.
There are support groups on line for sjogren’s or try the Lupus association.
Good Luck |
|
|
hands & fingers in IBM
Posted at: 2009-12-08, 15:37:27
|
|
Just wanted to draw attention to the latest copy of the OUTLOOK where a doctor is discussing how the hands & fingers are affected in IBM.
Pity some of our doctors don’t know this. |
