Multiple Sclerosis (MS) Support Group

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mamak1118 04/05/2011

I have an appointment with my pain mgmt doctor today, because what he gave me is not helping. I have to tell him that I've been taking more of the Norco than he prescribed, which I know is a mortal sin. Last time I tried to explain the type of pain I was having, he looked a little dubious. How do you explain that it hurts to have air (especially cold) hit your skin? That it hurts to have somebody even act like they're going to touch you, because your nerve endings "jump"? That when you turn off the cold air and start to get hot, your legs ache like you've just run a marathon? That typing, sorting papers, writing all hurt your fingers and arms. This all sounds so lame to me, and I'm sure it will to him as well. I'm almost scared to go to my appointment.

deleted_user 04/05/2011

If you found a doctor that looks at you sideways when you tell him the plain TRUTH about your ACTUAL SYMPTOMS of MS & what you are SERIOUSLY going through...my friend...

You have found the WRONG doctor...PERIOD!

Find another one that actually cares about you & your health!

Trust me! I have a Neuro. that does...they DO exist! It may take what seems like forever to find the right doctor or specialist...but DON'T GIVE UP the search!

Your life & your health is at stake here & you deserve to not just sit & waste away!...IT IS EVERY HUMANS RIGHT TO HAVE THE BEST QUALITY OF LIFE THAT IS POSSIBLE!...

GO GET IT MY FRIEND!

Take care,
Stay sane!

deleted_user 04/05/2011

It does not sound lame to me. It sounds like MS.

StuckAtHome 04/05/2011

How you feel is how you feel. How you described it here is perfect. You would think with a disease that attacks nerves it would be kind of obvious that pain can happen, but your doctor may be one of the older (or dumber) ones that doesn't "believe in" MS pain. It sounds like you either need a new doctor or you need to educate this one that MS pain is real. If you'd like to print out some information for him I have a few links that might be helpful. I would print the pages below, which also include a list of different kinds of pain associated with MS, and then point out which ones you are having a problem with. And if he won't listen to you after reading the information, definitely find someone new.

from the National MS Society:
"Pain syndromes are common in MS. In one study, 55% of people with MS had clinically significant pain at some time. Almost half (48%) were troubled by chronic pain. This study suggested that factors such as age at onset, length of time with MS, or degree of disability played no part in distinguishing the people with pain from the people who were pain free. The study also indicated that twice as many women as men experienced pain as part of their MS."
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/symptoms/pain/index.aspx

From WebMD:
"When most people think of multiple sclerosis, they think of a disease that causes symptoms of weakness and motor problems -- not pain.

"About 10 or 20 years ago, there was a saying that MS causes all kinds of trouble but doesn't cause pain, which really isn't true," says Francois Bethoux, MD, director of rehabilitation services at the Mellen Center for Multiple Sclerosis Treatment and Research at The Cleveland Clinic.

"In a national survey of more than 7,000 MS patients, 70% of them had experienced some kind of pain, and at least 50% were experiencing some kind of pain at the time of the survey," Bethoux says."
http://www.webmd.com/multiple-sclerosis/guide/treating-multiple-sclerosis-pain

deleted_user 04/05/2011

HEY! THERE! PLEASE DON'T WORRY IT IS BAD FOR US! I TOO HAVE PAIN WHEN I GET TOUCHED SOMETIMES! IT FEELS TO ME LIKE A REALLY REALLY BAD BRUISE LIDE A BLACK OR PURPLE ONE! TO ME WHEN I GET TOUCHED..HEY MAYBE TRY WRITING DOWN HOW YOU FEEL THAT IS WHAT I DO KEEP A JOURNAL..WHEN IT HAPPENS! MAYBE IF HE/SHE IS NOT HELPING FIND ANOTHER? THEY ARE HERE TO HELP US! NOT THE OTHER WAY AROUND! SO TAKE CARE! I AM "HERE" IF YOU NEED TO "TALK" OK Rhonda! (rhondinger)

mamak1118 04/06/2011

Thanks to all who responded. Went to the doctor, and he REALLY listened to me. It was such a relief -- he actually spent more time with me than I did in the waiting room! I guess I was worried that he didn't understand me, but he told me he has many MS patients, so that's good. Anyway, as always, I really appreciated everybody's support.
Kristi

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