Traveling

[scaredtodeath689]

Hi, I had a positive MRI and negative LP. I am going to see a neuro who specializes in MS. My current neuro said I should get Rebiff or one of the other similar meds. He said for me to chose a med myself and good luck. My GP was horrified and wasn't comfortable w/ that DX and is sending me to a specialist at UVA. Long story short is there any danger if I go on vacation before I see the UVA guy and before I start meds? My GP acted hesitant then said go. My symptoms are all over weakness and tired. I am traveling in the US. Thanks for your thoughts in advance.

[Quixotic1]

I think it is just fine to take your vacation before starting Rebif.  In fact, it is probably preferable to possibly having side effects and having them ruin a food time.  Stay as cool as you can and take advantage of wheelchairs and benches!  

How aware are you of the damage that heat can do to you?  Actually that overheating can do?  No sunbathing, no hot tubs, no luxurious hot soaking baths.  If this is news to you ask and you will be well informed on the dangers.

Your PCP was horrified at your diagnosis.  Why? Was it because your LP was negative?  There is NO need for an LP to be positive in the diagnosis of MS.  If you don't have a clear history of attacks or suggestive abnormalities on exam or there is any doubt on anyone's part, then a second opinion is a great idea.

Make sure you come back here after the trip and tell us all - the good stuff AND the neuro appointment.  That's why we are here.

Quix

[Guitar_grrrl]

Have a wonderful vacation.  

I recently went on vacation form my occasionally cool and foggy coastal Calif. town to hot 'n' humid North Carolina.  Saturday we were fishing on one of the lovely reservoirs, and even with a broad brimmed hat, I just got too darned hot and asked the guys to either row me to shore beneath a tree or row the whole boat under the trees.  They obliged (they know my situation), and we caught 13 Crappie we fried up that evening with a cilantro-pumpkin seed pesto to go on top.  

Here's the kicker - I'm only recently diagnosed (5/5/09) and I start my Rebif next week, and I had a wonderful time.  As much as MS makes a difference in our lives, don't forget to LIVE!!

Now get out there and have some fun!

Cheers,
Guitar_grrrl

[Heather3418]

I wanted to let you know that my MS diagnosis was confirmed at UVA in Charlottesville.  They have a good Neruology department, BUT...you are seen by interns first, then the head boss comes in and asks you a few questions and confirms what the internist states.

I never did like that, but I went to UVA for over ten years.  While I went there, these doctor's kept up to date with the way I was feeling and they will order testing that is thorough and complete.  That is the most important part of seeing a Neuro, being thorough and LISTENING to what you have to say.

Please let us know how the UVA visit goes.  I wanted to touch base with you more about UVA after you have been for your first visit.

Best of luck and have a great vacation,
Heather  

[Udkas]

Hi there,

I would take the advice of others here and go and enjoy your vacation BUT I am not sure where you are from but I would make sure you do have travel health insurance.  If you become sick overseas it can be very expensive.

I traveled over seas last year and I must admit I made an appointment with my neurologist and discussed health insurance/travel insurance, vaccines and meds that I might need while I was away etc.  I found this worthwhile and felt assured that if something went wrong I was prepared (like I had a good supply of Gabapentin), my neuro also gave me his number and said that if I was to get sick I was to get someone to ring him and he would liasion with the health professional I was seeing because obviously he had all my history etc. I was going somewhere hot so we also discussed heat strategies.

I would go on your holiday but just make sure you have any medication that you might need as it might be difficult to find a Dr when you are away.  I must admit I was holidaying a long way from home so if I had become ill it would have made things very difficult.  

Enjoy your break.

Udkas

[Lulu54]

Starting therapy and staying on it for MS is not like a cancer treatment or an infectious disease.  For example, it was over two weeks from when my doctor gave me a positive dx to the time the SS nurse could come and oversee my first injection.  If time were that critical, they certainly would not have made me wait.  Make sense?

Go and enjoy that vacation - it does the soul good to change our environment, experience new things and see the world.  Make the most of the opportunity while being mindful of heat, ok?

as always,
Lulu

[Fluffysmom]

I like ess's response better; ignore mine.  She's the voice of calm intelligence, while I kind of rambled.

Have a wonderful vacation.

Kathy

[essdipity]

Assuming your vacation is a few weeks or less, there's no problem with travel, as long as you feel up to it.

I think it's a good idea to get a second opinion. Putting off meds till then won't hurt. As a matter of fact, considering you wouldn't know what side effects the meds might cause, I think it's wise to go on vacation and enjoy yourself, then see the other neuro, then start on meds when you're comfortably at home.

Things will be okay, believe me.

ess

[Fluffysmom]

Hi there, do you feel up to going on vacation?  Will you be traveling in areas where it's really hot?  Sometimes heat and the stress of traveling can make your symptoms worse.

If you'll be taking it easy and staying cool, not traveling too long, that might be OK.

Will you schedule your appt. before you go?  Will you see him when you get back, or as the end to your trip?

The danger as I see it (an undiagnosed layperson, mind you), is that the longer you wait to start on a disease modifying drug, the MS has that much more time to progress.  The sooner you start taking it, the sooner it can start it's work of slowing or stopping the progress.

The other problem I see is how much fun will your trip be if you are experiencing all over weakness and are tired?  What do you want to do during your travels; will you need a walker or cane, or even wheelchair if you weakness gets worse in heat, for instance.

I don't want to scare you, just give you things to think about.  I'm not diagnosed, and have been traveling, trying to keep cool and not over-do things.  I came back from Florida extremely dizzy and fatigued, though I did better on a earlier trip to North Carolina.

Will you be driving, flying, taking a train?  I love to travel; I hope you can enjoy your travels, come home well and go to your appt. with the specialist.

Just some thoughts,

Be well,

Kathy