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What do I do next?

Hi, need some help to put my thoughts in order. I am due to see a ms specialist in a couple of weeks for the first time. I was dx earlier this year. Started taking Rebif in July and stopped treatment last week as the side effects were getting worse and totally un-manageable with two small children. I already feel so much better off of it. I am now deciding what to try next, if any, my main option is copaxone, as I can’t face any more side effects. I have had two relapses since diagnosis, not major ones, but bad enough. I am wondering whether I should ask the specialist for a new MRI to be done to see if any new lesions have appeared, or is it pointless finding out? I just think if I have all the facts It may help me decide whether to continue treatment or leave it. Are lesions a good indicator or is it all determined on the number of relapses? I still have symptoms every day, nerve pain which I take gabapentin for, tremors that come and go, jerks in limbs, fatigue on and off and dizzy spells, plus a few others. My old neuro (not a specialist) told me in the last consultation my ms is not active…how he knows I’m not sure?! Also I think it must be fairly active to have been eligible for dmd’s at all? he also tried to pass most of my symptoms off as psychological. My nurse has been far more supportive and agrees that my symptoms are real, hence the switch in neuro at her request. I think the Rebif experience has put me off the whole idea of injections, and doing one every day will be hard going. I just feel lost, want to hide from it all and get on with my life. So sick of everything MS. If anyone can pick their way through my ramble and has any advice for me I’d be very grateful. Feel like I can’t see the woods for the trees :frowning: Thanks, Laura x

Oh I do chuffin` hate it when I read that some neuros are putting genuine MS symptoms down to psychological reasons!

What on earth is going on with that I wonder! Are they trying to get out of treating people properly, reduce waiting lists or what?

I was once given some advice by a long term MSer. She said, never cry or rant infront of a neurologist, or they will put you down an neurotic! I do think that could be true sometimes!

It is obvious your symptoms are not all in your head.

I`m so glad your MS nurse has been on your side and is recommending seeing a different neuro.

Things should improve with a new neuro hun and hopefully you will get on a drug which will give you no nasty side effects.

I know what you mean about feeling lost and wanting to run away from it all. Sadly, we cant do that…but if only, I`d be with you in that race!

Hang in there hun, yeh?

Keep talking to us, we understand.

Good luck

pollx

Give copaxone a try, I used it and found no side effects apart from irregular periods. I’m off it now as I’m preggers but will go back on it after baby comes. And i TOTALLY know how you feel about wanting to run and hide from everything MS. I feel the same, get really fed up with feeling so trapped in MS land. Maybe it’s still early days and that feeling will wear off. Hope so. I’ve been diagnosed a year but had my first attack a couple of years ago. PM me if you want to chat xxx

Hi Lisa, good luck with the pregnancy hun. When is babby due?

pollx

Thanks Poll. Bubs is due on the 15th feb. Exciting times, if a little nervous about how I’ll cope with MS and new baby, eeeek! X

Please don’t be put off the dmd’s because Rebif has not suited you. Copaxone may be totally different. This just goes to show that we all react differently to them as i’ve done well on Rebif.

From what you have said it does not sound like your ms is not active - quite the opposite. If you have had 2 relapses this year thats pretty active!

Have a good chat to your neuro but if it were me i would definately be wanting to start Avonex/Copaxone

Good luck

Teresa.x

Hi Laura

I agree with the others, it is definitely worth trying a different DMD. If you’ve had 2 relapses since diagnosis then your MS is active despite what the previous neuro said (he’s clearly an idiot and not an MS specialist). I also had 3 relapses in my first year but Rebif worked for me and kept me relapse free until this year.

I think if you could find a DMD that works for you then you could have several years like I’ve just had. That’s not to say they’ve been symptom free (if only) but at least I haven’t been trying to recover from relapses as well which all takes up precious energy. Of course, the less relapses we have then the less new symptoms we have and some of our long standing symptoms can recover a fair bit and calm down, maybe not disappearing completely but fading into the background more often.

Why not write a list of questions for your new neuro and stick to the major concerns you have about your current symptoms and DMDs? Ask him what he would do if it was him in your situation?

Tracey x

[quote=“lisaC”] Thanks Poll. Bubs is due on the 15th feb. Exciting times, if a little nervous about how I’ll cope with MS and new baby, eeeek! X [/quote] I had the worst fatigue ever after my first. At one point it was query post natal depression as I was so lethargic. That was pre dx but post 1st relapse and with hindsight it was definitely worsened by MS. You must make sure you ask for help if you need it and at least you are prepared and know it may be tricky. Having said that, it is a wonderful time. The best advice I was given was to sleep when my son did. When I started to do so - even just 2 hours after getting up - things improved rapidly. Take it easy! xx

Give another DMD a try- I didn’t get on well with rebif, had bad headaches and I switched to copaxone which suits me much better and no real side effects other than injection site reactions which I got with rebif anyway. Cathy

Hi Laura, I started on Copaxone 4 weeks ago as my 1st DMD. Apart from tenderness in the area I’ve injected, I’ve had no side effects at all. In fact I’m feeling great now:-). Having to do the injection every day has just become routine now and I feel it is a small price to pay for the good it is hopefully doing. I injection at bedtime, sit with an ice pack on the site for 15min, then off to bed. Good luck with the decision making, I hope you soon have a plan and can move forward and not be as MS focussed as you feel at the moment. RedShoes xx

I guess the best thing to do is have a good talk with the Neuro about my feelings. The idea of doing this though fills me with dread, scared to say anything as its quite often interpreted wrongly or dismissed. sure he is going to tell me my symptoms are all in my head (like the last 2 neuro’s did) Just seems to me this is what I always get told, no matter how much I (politely but firmly) protest.

I have had episodes of depression in the past and I know I’m not depressed, just fed up of not being listened too by the ‘experts’. I have been requesting counselling since dx, partly as I know it helps to talk things out and partly to show the Neuro s I’m not depressed…However still no referral 10 months on! So what can I do?!

I haven’t ruled out treatment, but I want to know what’s really happening before I decide. Maybe the new Neuro will be a breath of fresh air…here’s hoping! Thanks for all your replies, it has helped me lots.

Laura x

Many congratulations Lisa! I’m sure you will cope just fine, just get lots of rest when you can! Enjoy the baby while he/she is small as they grow up soo quickly! Good luck x

Laura - the symptoms you describe are all perfectly valid symptoms of MS and as you are seeing an MS specialist I think you should give him a chance. He may decide to try you on different meds to tackle these long standing symptoms and/or try a different DMD. Fingers crossed that you get one who is as understanding as mine is.

When I’m having a good year, I can be in and out within 5 minutes as there is nothing new to report and we might just discuss the symptoms that give me the most bother but in a bad year we have a long discussion and decide on the next course of action. I do know what you mean about other neuros though as the ones at the previous hospital, I felt, were a complete waste of space and had already made their mind up about you before you walked into the room :frowning:

Tracey xx

Thanks Tacey. I know I shouldn’t judge him before I’ve even met him, the very thing I don’t like them doing to me! It’s just very hard not to when I keep coming up against brick walls. I will try and keep an open mind :slight_smile: x