I never know what is happening to me

[loopey]

I have posted here a few times but I still feel so confused and scared. I was diagnosed in November 2012 with RRMS. I know I have had it for at least 10 years but the symptoms came and went and didn't bother me much.

2 years ago I was incapacitated with dizziness, lack of balance and double vision. The symptoms got better but never went away. I had an MRI done and they said it was OK.

A year later the dizziness got worse again as did my balance and I have occasional double vision. I also have urinary hesitancy, a burning tongue and crying jags. That is when another MRI was done. The first one did, in fact, show lesions. The second one showed more lesions and I also have one on my spinal cord. Aubagio had just come out and I started on it.

So.... I have been on Aubagio for several months. I have good days and bad days but now I have burning feet and the dizziness is very bad for the past two days. I don't know if I am just having a "bad spell" or a flare up (meaning the Aubagio isn't working) or if my symptoms are progressing. I am scared to death.

I don't want to be a complainer all the time but I think I am really new to this and I am still in grief. I feel that who I was died and that there is nowhere to go from here but down.

My mom had MS and was in a wheel chair till she died. There was no medication then and she was even labeled mentally ill for a time and hospitalized and given shock treatments. I know that isn't my story but it did have a horrible impact. All my life, MS was my worst nightmare.

[22cyclist]

loopy: I am sorry you have had such a hard time lately! With the road of MS that you Mom took (unwantingly) there is no wander you feel even more stress about every little thing.

As far as an exacerbation, have you had the burning in your feet and the dizziness for more than one day? If yes, then they may be an exacerbation. This still may not mean your doc will treat with IVSM. Most of the time they want weakness to be a part of the equation.

If that is the deal, ask for something for the burning in your feet (neurotin, lyrica etc.), and something for the central nervous system dizziness (valium works the best for CNS dizziness-it doesn't take much). Hopefully with these drugs, you will feel better until the exacerbation passes, and you can have them on hand until the next one.

Does this mean your DMD is not working? You will know at your MRI. If new lesions are there, it is not working for you, which happens sometimes, and you can switch to another DMD. Make sure your neurologist knows about each exacerbation, or what you believe is an exacerbation. Ask for an MRI if you feel uncomfortable.

I hope you feel better and can get some medications to help you.

Take care
Lisa
Moderation Team

[naphappy]

Loopey-

I just wanted you to know that I understand how you feel.

I fought being diagnosed with MS for years. My neurologist tested me for everything until she finally told me, "if it walks like a duck and quacks like a duck, it's a duck!"

I am the fourth person in my family with MS. Growing up in the 70s and 80s there were not any DMDs and the effects of MS were horrific.

I cringe when advertisements and articles seem to make like of symptoms and progression. I know they don't want to scare people, and I can appreciate that, but reality will be what it is going to be.

I know that "we" have so many more treatment options and symptom management options than our family members. And I cling to that.

I think that it is a good thing and important that you realize that you are still in the "grief" stage. No timeline for how long that will last. I seem to go back and forth and it has been a while.

I also struggle with double vision and vertigo. I also have spinal lesions like you.

I have not tried Aubagio but recently started taking Tecfidera. I have been off Copaxone for a year and a half. My neuro didn't think C was keeping up with my MS. Had trouble with blood work required for Gilenya then tried to wait out the approval for Tecfidera.

Too soon to see if it is working.

Please call you doctor and discuss your concerns. Keep a journal of your symptoms and the different medications that you try- also the side effects and positive results.

I take Neurontin for the burning, crawling feelings. it take some time to get to the right dose.

Good luck and please understand you aren't alone it this.