the beginning

Everyday living
1

hi all

this will hopefully not ramble on but i felt i needed to talk. diagnosed 2 years ago,consultant then and ms nurse then happy to leave me alone with the benign ms tag.

now here i am new consultant,had lumbar puncture,new high tec mri scan done.got ms nurse appointment in an hour and i know drugs will be on the menu. i have spent the last 2 years very well with no drugs and knowing now whats ahead im scared. i know no one wants ms or the drugs but i luckily have never had to take any drugs in my 50 odd years except the odd paracetomol.

its scarey isnt it. i work full time and have a mortgage to pay and envision going to work with the drug side effects and having to inject isnt so appealing. sorry if i sound like a wet wally but im so nervous as my 9 o clock app approaches.

i already know that there have been some changes on my old scan to my new scan as i have had some eye issues[glaucoma] and yesterday my opthomologist mentioned it as he looked at my eye scan. he said i should discuss that with my consultant in january at next app.

i apologize for the ramble

love to all

kim

2

Hi Kim

it’s the unknown that’s scary hopefully after your appointment you will be more informed and feel better. I was always the same a you I never took tablets but now find I’m on quite a cocktail but they work so I can’t really complain.

Hope your appointment goes well and puts your mind at rest.

Freckles

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Hey Kim

No need to apologise - we’re all in, not quite the same boat, but ones from the same naff boat yard :wink:

Hope the appointment goes/went well, and don’t fret too much on the meds - before you know it they’ll be as routine as brushing your teeth or having a digestive with a cup of tea.

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thanks,the nurse app done. she was really nice. i am now waiting till january to see consultant and discuss meds or no meds.

feel bit better now

thank you both x kim

5

Hi Kim

I’m on my first DMT Tecfidera, a tablet taken twice a day with meals and no injections. I’ve had minimal side effects of indigestion in bed a few times and a bit of flushing (pinking of my face and feeling warm) about five times in total. They seem to be resolved.

xx

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thanks lenney

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At the end of the day Kim, it’s your choice whether or not you take meds. I don’t, the medical bods have asked but I decided not to take them up on their offer.

Take care

Andy

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8

Kim, I agree with Andy, it’s your choice. I was on a DMD for several months and chose to come off it because of the side-effects. Not everyone gets side-effects, and many on these boards have nothing but praise for their DMDs. I’m glad I tried them, but they were not for me. However, I do take Gabapentin for pain, stiffness and spasms, and I wouldn’t be without them.

Btw, don’t worry about injecting, it’s easier then you think.

Ben

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9

I think you will quickly replace trepidation with a sense of optimism. Don’t be anxious; something good is about to happen!

Get on the drugs and feel as though you are doing something to contribute to a long, healthy and able bodied future, instead of simply indulging the hope that good fortune continues to shine upon you.

The idea of needles and three days of flu like symptoms was no real option for me; especially not for as long as an oral alternative, which with hindsight has bugger all side effects and complications, remained viable.

Tecfidera. get it. take it. love it.

And that goes for you too carrabloke.

frankly, ‘so far so good’ is a pretty flakey way of tackling the need to secure a life filled with doing what you want because you still can.

Even the prevailing wisdom from the pill pushing neurologists is to start DMDs as soon as you can. The attitude of “wait and see” is negligent, passive, reactive, inadequate and is quite-rightly and increasingly, shunned.

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10

Another “right to choose” advocate here.

You may be quite surprised that your neuro doesn’t automatically think the drugs are the right path for you.

I worried myself sick about how to tell my neuro I didn’t want them - and the ensuing lecture/confrontation.

Only to get the reply: “Good girl! That’s what I would have done!”

If only he’d revealed that from the start, I would have found the whole business of considering - and rejecting - DMDs so much less stressful.

But these days, they don’t like to confess to anyone that they wouldn’t have them, in case it lays them open to the charge that they tried to sway the patient’s decision.

Well, I wish he had tried to sway my decision, and told me frankly that, in my place, he wouldn’t do it, because then I could have refused with an easy conscience, and not spent months and months worrying about it (my treatment discussion was delayed by months due to staff sickness, and in that time, I got myself in a terrible state).

In a way, I respect him for keeping his views to himself, to make sure he wasn’t the reason I said no. But at the same time, I think some patients (I’m one of them) are looking for a clear steer about what the consultant would do. If he’d said: “Well look, you don’t have the hallmarks of aggressive disease, and in my opinion, the benefits to you may not outweigh the risks and side effects.”, I’d have thanked him for putting his cards on the table, and helping me with such a difficult decision.

I sometimes think all this: “Well it has to be the patient’s decision, and we wouldn’t want to interfere” has got a bit out-of-hand, and we need them to bloody interfere!

So don’t be afraid to ask: “What would you do?”, and see if you can get a straight answer! They might surprise you, and say: “I’d be cool about leaving it.”

Tina

x

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11

Benefits versus risks is a valid concern and one that each patient needs to consider very carefully.

I would question the value of any drug, when recommended to an asymptomatic MS ‘sufferer’, if it required the management of a shopping list of side effects.

But what if… there were no risks and few if any side effects? This ‘what if’ is my reality and i would urge everyone to determine whether it might become their’s as well.

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