What do you think?(long)

[4boysmomRN]

Hi everyone, I have posted on a couple of the other boards, but I am new to this site, although I have had MS since 2004. at that time I was having problems walking, double vision, fatigue, numbness, just about everything. at first I was told it was brain tumor but the neuro followed up with another MRI of brain and spine. I have 'numerous plaques in the brain and the spine', I stopped counting after 13. I did avonex for a year and then did nothing, although still had regular visits with my neuro and had several episodes that I thought was a relapse although really it was the same problems as before, just worse.

My Left leg has been numb for over six years and i get foot drop on the right side and occasionally on the left when hot, or stressed. I have been going through a 'relapse ' since April and nothing has helped two rounds of IVSM and sx treatment. I have severe fatigue, cog fog, and my legs are so very heavy, my arms get that way too. My question is never have any of my MRI shown enhancing lesions, they have pretty much stayed the same as the first one in 2004. Why do I feel like I am getting worse? I had a few good years with just minor things, that I never worried to much about(denial, maybe) but now I am worried. afraid I am losing my mind. I have an appt with neuro next week, what questions should I ask? I know this is long, I am sorry. This board has been wonderful to read through. everyone seems so kind. Thank you in advance.

[RoyaleMSer]

It's possible that you may have a progressive form of MS. I would ask your doc about his/her thoughts relating to the matter.

[MrsBones]

Sorry you're feeling worse, but you're not going crazy.

First, remember that MRIs often do not match up with the sx you experience. You could have tons of lesions and be basically sx free or have few and feel like you're falling apart at the seams. Number and location of lesions mean next to nothing.

Second, MRIs are just a snapshot in time. It's just like any other picture, albeit a very high tech one. It shows what your brain looks like at that very moment. Lesions only enhance for a small time frame. Lesions do heal and virtually disappear from later MRIs. Some lesions are too small to properly see on an MRI but could still cause sx.

Combine those and you could conclude : a.) you have only a few lesions that make you feel really cruddy with the sx they cause occasionally acting up or progressing, b.)you had more than those few that for some reason weren't caught on MRI, c.)you had lesions that healed enough to be unnoticed on MRI, but caused enough havoc that you feel miserable or d.) the same areas are becoming inflamed ( think of it as old lesions becoming active again) with previously undamaged surrounding areas sustaining some damage that isn't showing by the time you have an MRI because it's either not significant enough to show yet or it has settled down and healed enough that it doesn't look much different than it did before. Whew..."d" was kinda long...sorry about that.

There are a number of reasons your MRI and sx may not match. Ask your doc for his/her take on it. MS is a sneaky son of a gun. Never does what it's "supposed" to do. That doesn't mean you're going crazy.

Hope you feel better soon.

[Justsayyes]

I think you should express to your neuro exactly what you said here. I would want to know what options there are for treatment if you don't start to recover from this flare.

I can relate to how you feel, my MS has been fairly mild, so I get scared when I have a period that affects my daily living.

I hope your neuro will help develop a plan for you, let us know how your appointment goes.

[4boysmomRN]

Thank you

Thanks for your thoughts and the advice. I was wondering myself if this could mean a more progressive type. I hope not but it is what it is. I am way out in the boondocks so internet connection is not always that great, so if I don't reply it is because I can't get on! I appreciate you taking the time to read my post and I will let you know how the appt goes next week.