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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Hi Kimtol. First of all, welcome. WE ARE SO GLAD TO HAVE YOU HERE! And sweetie, youre not going to like this, but I have to warn you, many MANY of the things you are telling us ring very true of MS...and I know if I were you, and I just said that to me, Id be crying right now. BUT- dont cry. What you are dealing with is so familiar to all of us and it wasnt that long ago that a doctor put me thru the exact same thing you are going thru, and believe it or not, you WILL survive!

Lets talk about why all the blood work. First of all, MS is 99% diagnosed by ruling out every other disease. Lyme, Lupus and many vitamin deficiencies present the same as MS. Unfortunately, there is no blood test for MS. So, you have to rule out everything else and then concentrate on the MRI and the symptoms. There is something called the McDonald criteria, which you can look into- there is actually a newer, updated McDonald criteria available, this is what most docs use to finally say yes or no to MS.

It does sound like the doctor you are seeing is doing an excellent job of taking control of this so far....now, its up to you. PLease, when you get the test results of your blood work AND your MRIs (both films and reports) keep copies for yourself. Unfortunately, with MS, you dont always get a quick diagnosis. They may want to see you back in 6 months to see what has changed, and BELIEVE me if you come with the last set of MRI films and the last set of test results, you are going to do yourself a huge favor, saving both time and money. You might also consider taking all of this, once it is complete, to an MS specialist, someone who can give you another opinion, and they will want to see everything as well...so, start not only keeping copies of everything, but sometimes a journal is good. Things like when symtoms start, how long they last, if you took anything for them and whether or not it helped..

Now, I am so truly sorry to hear that you lost a baby. Tragic and I cant imagine...but the reason I bring this up, is because many MANY people wind up with MS symtoms POST STRESS or TRAUMA! So, this horrible thing you had to deal with, may very well be what brought your symtoms on...believe me, MS doesnt come on over night..many of us were told we had it for 10+ years before a dx came...and thats because most people with MS have what is known as relapsing/remitting. when you are remitting, you are FINE. Totally fine. When you are relapsing, not so good! with this type of MS, you can go for months, years or even a decade without a relapse....and there is no guarante that it will ever progress to any other stage. The new meds, which are mostly shots- are supposed to keep the disease in remission. I can honestly tell you, in the two years Ive been on Rebif, Ive not had any setbacks.

what else did you ask? Oh the symtom of your pain when you look down- that is known as L'hermittes syndrome...hurts, doesnt it?? Not everyone gets it, and usually this sort of thing will come and go...but it is a symtom of MS.

The numbness, tingling and heat sensations are also signs of MS, but again do not let this upset you...other diseases also present with many of the same side effects and symtoms....

The ON that you are expericing is horrible. I had it right after my dx- ive had it three times. Have they spoken to you about steroid treatment? You should investigate it, although if it has been "too long" they might not allow you to do it at this point. Normally ,with Optical Neuritis, they give you IV steroids, called IVSM or IV soluMedrol, a type of prendisone thru the vein for a few days, the steroid shrinks the nerves and restores the eye sight, it can also relieve the pain....but its worth asking about.

we (i) know you are scared to death....but please try not to be. There are so many of us in this country and world dealing with this and almost all of us live normal lives, with kids, families and responsibliies and jobs...we will help you get thru this! We want to hear from you, your not alone, okay??This is the scary time and you can count on us to help you thru it..
hugs to you!
Nikki





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