So many questions

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

So many questions

Postby ping » Tue Apr 24, 2012 8:36 pm

I am new to this site & to MS. I've had pain & numbness in my legs & feet for a few years now. My primary Dr finally sent me to a Neuro. She in turn did an MRI, which showed 8-9 lesions. Then she did a spinal tap which she said came back negative. Still she is very unsure what it is. She wants to treat me for MS starting with Avonex for 8 weeks then do another MRI, but still no definited diagnosis. I really don't know what I should be doing. All I know is I'm tired all of the time, my legs & feet hurt terrible, sometimes I sweat like crazy for no real reason while my feet are as cold as ice cubes. If anyone has suggestions or has anything similiar to this I would appreciate your input. :?
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Re: So many questions

Postby NHE » Wed Apr 25, 2012 12:45 am

Welcome to ThisIsMS. From my own 10 year experience with Avonex, I could not imagine starting it without a firm diagnosis due to the side effects. Granted, everyone reacts a little differently, but for me the side effects were quite bad. You might want to look in the Diet and Natural Approach forums for things you can do that don't require pharmaceuticals while you are waiting for your doctors to figure things out.

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Re: So many questions

Postby DougL » Wed Apr 25, 2012 4:10 am

Welcome. if you have the time to spend reading TIMS, most of your questions can be answered.

sorry for your troubles
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Re: So many questions

Postby want2bike » Wed Apr 25, 2012 5:09 am

Some people treat MS with diet. Many diseases are treated with diet so check out the diet section on this site. If you decide on Avonex you need to know what to expect. Here is a link to tell you what other have to say about the drug.

http://www.askapatient.com/viewrating.a ... ame=AVONEX

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!
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Re: So many questions

Postby ping » Wed Apr 25, 2012 11:03 am

Thanks to everyone for the good advice. I have looking at the nutrion side of things. I guess I'm just really desperate for some relief. Thanks so much.
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Re: So many questions

Postby FLJhawk » Mon Apr 30, 2012 5:44 pm

You need to take some control, and one way is by changing your diet and taking supplements. The nutrition board has tons of helpful information. I literally have a cabinet full of vitamins and other supplements! D3 is very important, and Malic Acid may prove to be very beneficial.

Maybe before starting a powerful MS drug, research LDN and ask your doc to try that while she is trying to figure things out. Many won't as they don't understand it, but some will. In low doses it won't cause you harm, but it is worth trying. A lot of us are in a rush to start those powerful MS drugs, but we are not really sure how helpful they really are, and the side effects can cause some of us a lot of problems.

If you have the funds, investigate CCSVI. Some people find immediately relief from that, while some other appear to get worse (even though there is no clinical reason for that to happen) or have no changes.

If you have a lot of money, check out stem cell therapy, which some claim is a cure. You can't really get it done in the US outside of a control study, but there are clinics in Israel, Germany and India that will do it. Super expensive and the recovery will take months if you do the full bore chemo.

Sorry you might have this, but you will gets lots of support here.
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Re: So many questions

Postby MarkLavelle » Mon Apr 30, 2012 7:40 pm

ping wrote:I've had pain & numbness in my legs & feet for a few years now. My primary Dr finally sent me to a Neuro. She in turn did an MRI, which showed 8-9 lesions. Then she did a spinal tap which she said came back negative. Still she is very unsure what it is. She wants to treat me for MS starting with Avonex for 8 weeks then do another MRI, but still no definited diagnosis.
Your story places your neuro at the "pretty aggressive" end of the doctor scale, but not off the scale. Many docs are willing to treat CIS (clinically isolated syndrome) as if it were a MS dx, on the theory that the DMDs probably won't hurt anything (much), while MS will for sure degrade your CNS. Even so, she should have also told you that there is no way to know if Avonex or any other DMD will actually improve your sx.

As for the dx itself, she can't 'officially' call it MS until there are multiple (M) damage sites (scleroses, or S) that are also separated in time, per the currently accepted criteria for MS. So far there's just one snapshot, apparently with no evidence that some lesions are more recent than others. The point of going back for MRIs is to look for new lesions. Until new lesions appear, a good neuro will keep looking for evidence of MS or anything else...

RRMS dx 3/3/11; Copaxone since 12/1/11
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