Recently diagnosed and trying to stay focused...

[phoebe.]

Hi, everyone.

I was diagnosed on August 16th after a busy 2 weeks of MRIs, tests, two neurologists, etc. My days now fluctuate between being in "action mode" to fight it, denial, and confusion. I've been reading these boards and learning much from all of you - so thanks.

I'll soon be on a DMT. After doing the research I wanted to get onto Betaseron, but my insurance considers it a step medication and won't approve unless I've been on Copaxone and Rebif and those don't work. I've never had a serious illness before and never imagined, since I have health insurance through my employer, that getting access to medications & tests would be difficult. What a wake-up call.

I'm leaning toward Rebif, even though the side effects concern me. As does the stinging/burning when injecting. I'll pre-medicate and take note of all the tips I'll learned from reading various posts here.

I am a very active 41 year old. I have a demanding career. I am currently single, and while on one level am glad I don't have the concerns about caring for my children, I also am fearful since I don't have a family here to support me. [My family live in other states.]

I travel outside of the US, for 2-4 weeks at a time, about twice a year. During these trips I am staying in hostels/hotels without refrigerators in the rooms, and often without A/C in the room (though a fan is there). These trips are a very important part of my life, and I am concerned that with the meds needing to be kept at certain temperatures I am going to have to adjust this. Do any of you travel, and can comment on how you've adapted? I figure when traveling in the US I can request a refrigerator be placed in the hotel room. But what about overseas where this may not be an option?

I think you guys are going to be a major source of support for me. I'm glad I found you!

phoebe.

[Bob698]

Well, first of all welcome for all the wrong reasons.
Just getting your DX can be tough. Some (most?) of us went through the seven stages of bad news deal after we heard it. I think that's natural so while you shouldn't expect it, you might want to plan for it in case it messes with you. If you know its happening its tougher to make mistakes.
I hope I'm wrong but traveling with needles can be a total PIA. Traveling internationally? I don't see that being easier.


If you know someone who has a similar job and also has diabetes, they would be worth cornering for advice. I'm guessing at a minimum you'll need a card signed by your Dr. , even if you intend to ship your meds as baggage and not as a carry-on. Refrigeration will probably be a hassle and most of this stuff isn't cheap to replace if the airline or hotel screws up. Long term, you might want to check into having your meds waiting for you when you arrive (ie, have a script ready and buy locally).

[twisterred]

Hi and welcome,

Bob698's advice is good. Get your doc to write on his script pad that you have MS and permission to travel with the med/needles. Always carry them on the plane in your bag; never let them out of your hands.
I've flown a number of times and never been questioned at all.
I also have good news. Copaxone does work for some people.
This will be my 14th year taking those daily shots.
In the beginning it was very odd and the side effects were much more uncomfortable than they are now. It takes months for the body to get used to Copaxone, but with a good attitude and some anti-itch gel to rub on the injection area each day, it is very simple.

Stay with whatever med you can that works with you.
I tried Betaseron years ago and couldn't take the side effects after a few short months.

Like you, I was always healthier than most (docs say that is because our immune system is in over drive).
MS is life changing, but life is still very good. This is my 24th year with the disease. No one know I have MS unless I tell them. My life is not as busy as it used to be, but still very, very good. I've met great friends thanks to MS (surprise benefit). Without them, I'd have been a mess.

Early treatment is best. It's a progressive disease whether you treat it or not, so good for you. :-)

Great to meet you and welcome!!

[KoKo]

Hello Phoebe

Welcome to the Forums here at MS World!

It's nice to know that this site has been beneficial to you already

You're wise to be thinking ahead of time about your travel needs/adaptations. I'm not much of a traveler, so I can't help much on that issue.

Good luck on your DMD decision. Have you checked out our Medications Forum? You may receive helpful insights and feedback there about specific medication questions.

Hopefully we can be a source of support, encouragement, and information for you

Take care,
KoKo

[kjgimnrn]

Hello,
Like you I have recently been diagnosed (in April of the this year.) I am on Betaseron and found the support the medication company provided to be very beneficial. They sent a nurse to my home to teach me how to give myself inj. and they call me about once a month to see how I am doing. Listen to what they suggest, they know their product better than anyone. Most of the meds I believe have some sort of system in place.
I struggle with this at different times...you are not alone! I have found comfort in posting a blog, if for no other reason than myself. There is a neat blog I believe it is "How I fight MS" it is about five people living well with this disease. From someone learning to deal with this, this is what I suggest...accept your new limitations...ask for help, celebrate you victories...even when they are small, when you are tired either nap or have some caffeine and find a Dr who will listen well and do something for your symptoms. I felt a little odd when he put me on something normally used for narclepsy and alzheimers, but it has worked. Best of luck...take care...Kelli

[phoebe.]

Thanks, everyone, for your replies. Very helpful! And it is great to know I am not alone and can always come here for information, to vent, share, etc.

I've ended up on Betaseron, which is the DMD I wanted. Just started today - and the injection went well. I'm feeling much better than I anticipated. The pharma company has been great - helping me work through the insurance requirements, etc.

Kelli - I'll check out the blog. Thanks!

I travel frequently, for work & for fun. My next trip will be in a month. I'm going to do a couple of little trips before embarking on an overseas one, to be sure I know how to handle things.

phoebe.

[Bob698]

I keep getting told that I should do my shots on time and stick with a ritual. For example, every other day at 7 PM.
Start investing in an NSAID/Ibuprofin. I take a couple of Advil/Alleve/Whatever two hours before my shot. It helps.
Welcome to the Beta club.

[kjgimnrn]

I found Motrin before my dose helpful, I don't need to use it anymore. I am assuming they started you on a small dose and you will increase every couple of weeks. I didn't have any side effects for the first week and then had some the second week, so they had me stay at that dose for an extra week. When the side effects subsided a few days later then I increased. So if you are having issues call the company or your doctor, they will help! I was really afraid I would have nasty side effects, but honestly other than the second week, they have been fine. The only issue I have is it I have the skin reaction they talk about, but since I am not showing off my mid section, I don't really care. And if you can master it I can't even feel the injections when I give them in my hip/back!