I'm sick of this - what stage am I in? Also Vacation?
 

1st exacerbation 1-31; legs went, falling...as I got better from falling dif sx came. Dx 2-16 MS; 2 Ty since. No new sx for 2-4 wks or so. 1 mo ago eye prob started (less vision, lighting streaks, lash flicker...) on and off. Never straight for 24 hrs. Still going on. 2 weeks ago soles of feet started burning. Like walking on coles almost. I saw one ref to this being SPMS sx - I'm RRMS. (scared). Another board ref a very few w/this. I don't understand. Am I still in 1st exacerbation, pseudo-exacerbation, another exacerbation coming, is this how the rest of my life w/MS will be, just writing this I am upset and fell my lips... start to tingle and swell. 'll look like a freak is I can't calm down. WHAT? Just guess. I have noticed reflux is coming bk. I've had it for yrs, but not too bad till just before 1st exacerbation.

2nd question - I need to book today a room for vac. Since the start of school (prior to MS) my 6 yr old has been promised the beach again. I have to drive 4.5 hours at best and then make it 7 days. How the heck am I supposed to do this? I can't say no - that is not an option. She has saved all yr for her crabs... beach... and has over 100.00 I am too broke to hire one to go along, so how do I make this happen. My kid wears the best, looks the best, and deservers the best. As does yours. How do u go on vac alone with a sm child and no DH, family or friends?

:hug: Sheena.

There is no way to know if this is just a lot of initial activity, i.e. if these are exacerbation(s), which is common in the first few years, or if you are SPMS, until you can be assessed over time.

I struggled a lot the first two years (1991 - 1993), then I did really well for the next 12. Then I struggled again (2003 - 2005), and then things started to look like SPMS for me. I was lucky in that I found a drug that works for me, and you may too. Most of our meds take time to work, so don't get too discouraged yet. :hug:

As far as your vacation with your daughter, I understand your apprehension. I have only had one vacation with my kids since 2003, and I did all right because I stayed put once I got somewhere. My daughters have traveled a fair bit . . . but always with friends and family.

She is young enough that hopefully she will be happy just hanging with mom. Alternatively, could you get her into a summer camp or something, where you don't have to go, but she still gets the same exposure to beaches, etc. that she is looking for?

Cherie

Sheena,

Sometimes the first year or two can be a real rollercoaster for symptoms. You CNS has gone haywire and sometimes it can take time for things to calm down.

Do not jump to the conclusion you are SP.

I have had feet that are painful to the point of putting socks and shoes on brings me to tears and going barefoot is just as painful. That happened with 3 of my exacerbations.

I believe your probably dealing with a fair amount of anxiety - quite understandably. However, anxiety and panic attacks can cause symptoms that are similar to those we get with MS.

Your reflux could also be coming back because of your anxiety.

Snoopy and Cherie are right. The first year or so can be tough because one, you are new and notice everything. Two, many symptoms are just that, symptoms. The way doctors try to gauge your level of ms is how you progress. Many times they wont even say 100% because ms is so unpredictable that they wait five years or so to see how things go.

The added stress of a new diagnosis adds to that. Stress is not a friend of ms and can sometimes exacerbate your symptoms. As far as vacation goes, just take it easy. Hubby and I always rest one day for every day out. Sometimes that doesn't work but I think you understand what I mean. If you go out and have a filled up day, the next you have a more relaxed day. We raised two children around hubby's ms and they understood and adjusted just fine. We did not let ms take over but adjusted with it.

I say don't let this rule your fun. Maybe the vacation is just what you need. :hug:

If I had to drive 4.5 hrs I would plan on stopping at least once if not twice for a break. It really depends on what your limits and sx are.

For me, my driving is limited by neck pain and fatigue, and the neck really limits where and how I drive. It limits all my travel really, even if I'm not in the driver's seat.

The thing that concerns me is, are you sure you're up to this? I know you hate to dissappoint your child. But you may want to consider how the stress of driving, the worry about being so far from home, all the activity, etc will affect you. Kids get over dissappointment and can deal with Plan B, when they need to.

Changing your plans is an option, if overcoming the sx is not, okay?

I know you said you have no family or friends to help you but what about one of the MS friends here? Are there any that live close by or that could meet you and your daughter in the middle. It might be nice to meet for a little vaca with another MS family who might be in your same situation. Just a thought...I know it is hard to not disappoint your little one.

Sheena,

It sounds like an exacerbation, and if so, then maybe Solumedrol for a week prior to vacation may be able to resolve this issue and then the vacation will be great. Hence, the stress-level will drop and you and your youngster will have a great time. Just be sure to take a good look at the route that you plan to drive and find places where you can stop to relax a bit (maybe for a fun lunch with the your 6 yr old). It will make the drive much easier.

Take care of yourself first, then it will make the vacation that much better.

-Vic