Information needed!

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Information needed!

Postby SierraJMalo » Mon Jun 04, 2012 12:20 am

My name is Sierra. I am a 19 year old college student who has recently been told that I have a major possibility of having Multiple Sclerosis. I have loss of vision in my left eye, joint pain that is chronic and increased difficulty in breathing. I am in pain 80 percent of the time to where I have to limit what activities I do. I get chronic headaches.
I have been having symptoms for the past two and a half years. I have seen many doctors and specialist about my reoccurring symptoms to rule out any other possible causes.
I am very nervous to get a lumbar puncture and to go through all this at such a young age. I know that it is horrible for anyone to go through this and I admire anyone who has for their strength.
I wasn't really sure what to ask, I don't know much about MS and I was too scared to ask my doctors. If someone could just explain things like tests and therapies that I might have to go through I would be very appreciative.
Thank you
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Re: Information needed!

Postby Scott1 » Mon Jun 04, 2012 2:03 am

Hi Sierra,

Firstly, well done for asking doctors to eliminate other problems from the list. Many people your age may have not been prepared to do that. Secondly, do not be afraid to ask your doctor any question. A good doctor is not afraid to answer as best he can and a bad doctor might be evasive.
A lumber puncture is only one test. Ask for an MRI. That is not invasive. Also ask your local MS society for advice on which neurologists can do the diagnosis for you. Many of us don't think highly of some of the doctors we have met so don't treat any of them like a God. You will build up your knowledge as you go along but you must get a proper diagnosis first.
The main thing is to find a good doctor who can advise about the need for medication. Not knowing is more worrying than understanding MS. You also need to find a doctor and an MS society with a positive frame of mind. Avoid people who start out defeated and find the people who will say they can help. You will find useful comments in these pages and some stuff that doesn't help as well.
Remember to take ownership of your condition otherwise everybody becomes an expert except you and you are the one that matters.
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Re: Information needed!

Postby FLJhawk » Mon Jun 04, 2012 9:23 am

Not sure a LP is "horrible". I had some major discomfort for maybe one second as the needle was pushed all the way in, but there was no discomfort at all after that, other than having to laying on my side with me knees drawn up, and then lying flat on my back for 2 hours following the procedure.

Some doctors can do LPs that are nearly painless I have heard. You may wish to inquire about getting one of those. LPs aren't fun, but there are other things that are worse. I had a cortisone injection in my foot once - now that really hurt and it hurt for more than one second!

You just have to do what you have to do. I hope it turns out not to be MS and something the doctors can do something about. But, for now, be sure to get on a good MS diet and start taking the various MS supplements, i.e. Vit D3, Magnesium, Zinc, Malic Acid, Vit E, etc.

Best of luck.
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