Recently Diagnosed, so now what....

[YFancyface]

Hi, I was was just very recently diagnosed with MS. I will be starting daily injections prior to the cruise and it just hit me- how am I going to get these injections on the plane? What about on the cruise? And they have to be refridgorated! Does that mean I need to bring a cooler? My goodness, so much to think about..... Just wondering if anyone could offer any advise? Some diabetics are in the same situation, right? I'm sorry, everything is just so new at this point.

Thanks for the help!

[sdschwrt]

Hi

My wife has been traveling with injectable MS medication for 15 years without problems. Until about 3-5 years ago it needed refrigeration. The box her medication came in fit into an insulated lunch bag, those rectangular insulated soft plastic containers. Her medicine was shipped with refreezable refrigeration packs which also were the right size to fit into the bag. We would pack the box in the center of the bag and place the ice packs on the sides and bottom. They would stay frozen keeping the medicine refrigerated for at least 8-12 h allowing us to cruise, fly to Europe and Mexico. When we travel to our next destination, we just ask the hotel to refreeze them for us the night before. If necessary, ice cubes in a tied plastic bag will work. Just make sure the medicine in double bagged as well so it is in a waterproof container. We keep the pharmacy tag on the box or if the syringes and medication need to be removed from the box, we take the top of the box with us. Once we arrive at our destination, we put the medicine in the minibar, ask the steward or hotel to refrigerate it or in a trip to Mexico where the hotel did not have a refrigerator, we arranged with a pizza place to keep the medication for us. Ate more pizza on that Mexico trip than we wanted to as we felt obligated to buy something everytime we picked up the medication. They put the freezer packs in their refrigerator for the trip to our next destination. Never have had a problem.

In terms of airport security, we have never had a problem. We tell them when we get to the security gate that we have injectable medication and they open it, take a look at it and we go through. As my wife has a large number of prescriptions, she has a large carryon with all her medications and the TSA people look at it and we go right through. There are no limits on size for both prescription and nonprescription medications. You have nothing to worry about. If there are questions about any medication politely ask to discuss the problem with a supervisor as TSA regulations are very clear that all medication in any size are allowed.

As newly diagnosed, I realize that you must be very apprehensive. The medications really do make a big difference. My wife has had MS for 35 years diagnosed at 24. She is ambulatory, has raised three children and travels throughout the world. We have seen a real benefit to the medication and she takes the shots consistently even though there sometimes is discomfort because they have drastically reduced her exasperation rate and symptom progression. One word of caution regarding travel. If you are taking one of the interferons, they can give you flu like symptoms. She does not get them everytime but once in a while she will have them. The morning we were to get on a plane to return home from Greece, she had severe chills and a fever. Luckily the symptoms subsided before we had to leave to the airport. With the current problems with H1N1 flu, I do not think you want to take a chance and have the flu like side effects when you get to the ship as they may not let you board. This would be true even if there was not a potential flu problem. As a precaution for travel, she does not have an injection the night before we travel.

Have a great trip

[HesitantCruiser]

You have many things on your mind, but travelling with your meds does not need to be one of your worries.

 

If you're starting daily injections, that indicates Copaxone to me. Copaxone can now be unrefrigerated for 30 days, you just have to protect it from extremes of temperature. I use an insulated lunch box with hard sides, which both insulates and protects the shots. If I know my carryon may get hot (like in a closed car, or if it's just really hot out), I'll add a small cold pack wrapped in a kitchen towel to keep the temp even. I keep the top of one of the boxes (which has the prescription info) in the lunchbox. I've never had any security give me a second look.

 

I know how much you have on your mind; I wish you much success and no future exacerbations.

[uppitycats]

Hi, I was was just very recently diagnosed with MS. I will be starting daily injections prior to the cruise and it just hit me- how am I going to get these injections on the plane? What about on the cruise? And they have to be refridgorated! Does that mean I need to bring a cooler? My goodness, so much to think about..... Just wondering if anyone could offer any advise? Some diabetics are in the same situation, right? I'm sorry, everything is just so new at this point.

 

Thanks for the help!

 

I'm sorry you have MS. I've been diagnosed since 1983 myself.

 

You might want to bring a cooler. You can get one of those soft-sided ones that will collapse as you use your meds, and you can get it filled with ice. The cabin steward will be glad to do that. The cabin refrigerators aren't always cold enough, but with the ice it'll be fine. Do check to be sure that you DO need to have it refrigerated. Many of the new formulations no longer need refrigeration, but merely need to avoid extreme temperature changes.

 

There won't be any issue carrying the meds onto the cruise ship. I've never been asked, my meds have never been examined or questioned.

 

As for the plane, I always carry my meds in their own carry-on bag, complete with copies of the original prescriptions (which can be obtained from your pharmacist or doctor), which clearly indicate that the meds are self-injectibles, and I'm carrying the equipment to do that. I've not ever had a problem. The agent sometimes looks, more often doesn't, and I just pass through.

 

The meds, by the way, can be carried on in addition to a regular carry-on, so you can take both if you want to try to manage both.

 

Have a great cruise. And I hope you will have many many more years of travel and adventure, living with MS.

[YFancyface]

Thank you all so much for taking the time to help me. I really, really appreciate it. It definitely helps to know, that I shouldn't be limited because of meds (Copaxone ;))! It's also empowering to see that others with MS still have the drive to enjoy as much as life as possible!

[Arwenmark]

Thank you all so much for taking the time to help me. I really, really appreciate it. It definitely helps to know, that I shouldn't be limited because of meds (Copaxone ;))! It's also empowering to see that others with MS still have the drive to enjoy as much as life as possible!

 

My personal philosophy has been you do whatever it takes, use whatever you need to use to live your life the way you want to live it, if it takes a cane use it, if it takes a WC get one, whatever, and don't look back and don't worry about how you look to others.

 

You will do fine it just takes a bit of forthought and planning. Reading on here will also help you with things you might not have thought of.

[cjankowski]

Sorry to hear you have MS. My husband was diagnosed in 2002. He travels over 250 some days a year for work, carring his meds on planes often. He puts rebif in a cooler style bag with a ice pack. He keeps all meds in his carry on. Has never had a problem. He does use a wheel chair sometimes in the airports to help him with long walks. Most of the time the authorites offer to help him through the lines and his entire party gets to go with him. So process time is very quick.

 

On the cruise ship's we usually ask cabin stewart to keep in fridge. Then he just calls when he needs it and they bring it to our room. We have never had any trouble with this. They will also keep ice packs frozen for when cruise is done.

[xxoocruiser]

I traveled the world for my job after my DX. Carried a little cooler and the precription label with my carry on bag. Though not working anymore, I continue to travel and have never had a problem with my medications.

 

Though copaxone can be stored at room temperature for up to 30 days, it's always best to carry it in a little softsided cooler. I also bring zip lock bags and leave them out everyday for the cabin steward to refill with ice . Also request a sharps container from the cabin steward upon arrival in your cabin. You have to think of everyone's safety when properly disposing of the needs. The cruise line will supply a sahrps container for free. You can also contact the Special Needs Departement a head of time.

 

The important thing to remember with your MS Dx is your are still the same wonderfull, dynamic, loving and caring individual you have always been. Don't ever let MS change your "SPIRIT". :)

[cjankowski]

My husband also would leave meds with the room steward until the last morning. This way they will stay cooler longer as we usually have a couple of days until we get back home. They seem to always bring ice for cooler and whatever you need in the morning as you are getting ready to leave your room.

 

I just wanted to let you all know that I particiated in the MS WALK 2009 this past weekend. I did not walk just for my husband but for all people suffering from MS. I would love to see a world free of MS, so the more we can do to help is the best thing in our minds.

[Scotts73]

Good suggestions everyone! This thread has helped me as well, I was diagnosed with MS last June and am going to begin the Copaxone soon.

 

It's so nice to hear so many other MS'ers still travelling, enjoying life! Sometimes all we hear is the negative about a disease, so it's good to hear some positive stories as well!

 

I will save all these tips so I can use them when I travel to DisneyWorld this winter and for my Alaska Cruise next summer!

 

Thanks!

 

Happy Cruising! :D

[cjankowski]

Hi

 

Scott - we just did Disneyland for Easter. My husband did very well and the best thing he did was to rent a scooter. Last time we did just a wheelchair, but I tell you for the exrta per day a scooter is well worth the money. Also, most areas of the park they let you & your whole party go in the back exits so you do not have to wait in the long lines. Just ask the park employees they are nice about it.

 

My husband loves to travel and we are scheduled on our 4th cruise this Nov. It is something that he can still do and enjoys it. He just takes one day at a time.

 

Has learned that you cant sit around you must keep going.

 

Have fun and good luck.

[xxoocruiser]

Good suggestions everyone! This thread has helped me as well, I was diagnosed with MS last June and am going to begin the Copaxone soon.

 

It's so nice to hear so many other MS'ers still travelling, enjoying life! Sometimes all we hear is the negative about a disease, so it's good to hear some positive stories as well!

 

I will save all these tips so I can use them when I travel to DisneyWorld this winter and for my Alaska Cruise next summer!

 

Thanks!

 

Happy Cruising! :D

 

I did a Disneyworld Vacation a year ago. Initially intended to rent a scooter daily at Disneyworld, but that proved to be the wrong decision for me. I under estimated the long walk from the parking lot bus drop off into the park. In fact that evening I had to ask security for assistance to a cab as I would not even tackle walking back to the bus area. Arriving back at the hotel that evening , the manager saw how I struggled, she than arranged for a scooter to be delivered to the hotel the next morning and also arranged to have an accessible bus with a lift to pick me up to get me to the park and back each day. ( My hotel offered free bus service to the park. It actually ended up being much cheaper. Scooter Rental through Disney is $50 per day, mine ended up being $30 per. Than there was the plus of having the scooter at the hotel and driving it locally to dinner each night as I did not have car with me . After the first day I had a wonderful time and would do it again now that I know what to do. :)