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12080135 tn?1453627571

Questions for first MS clinic - newly diagnosed

Well Supermum_,ms was bang on with her diagnosis the other day. My second MRI with contrast + various blood tests results were 'in' for my Neuro appt this morning.

I have seven active lesions in various bits of the brain (one brain stem too), at least two new since the last scan two weeks ago.

So, def diagnosis given of RRMS.

Start steroids on Mon to help speed this buggers on their way to sleepy town and will be getting letter re my local MS specialist clinic at a local hospital. Will see my MS nurse then and poss Consultant, less sure on that.

My Neuro today was really good and gave the news in a clear and concise way before happily answering all my queries about what the MRI/radiologist was saying. Seemed pleased I knew a little. Bloods all negative inc the Aqua something or other antibodies for NMO one!!

I realise the nurse will give me advice, but anything I should be asking or considering when we talk about the DMDs which Neuro has said he'll start me on?

What's out there just now that I can read up on/investigate ahead of the meeting?

Thanks peeps
X
15 Responses
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667078 tn?1316000935
The needles are not bad. The first one is the worst because it is new and it is real. When you take the first DMD you are saying to yourself this real, I have MS. They have gadgets to help with injections. I took mine at night when I was watching TV I needed the distraction. The needles are small. They are nothing like blood clot injections which I had to take after major surgery.

Also my hubby gave me shots. He liked being able to help. With copaxone some are towards the back and he helped with those.

I am on a chemo where I have to take eight pills twice a day. I wish they were shots.

Alex
Helpful - 0
5112396 tn?1378017983
Sometimes we have to do the chasing down ourselves, unfortunately. I'm not a big telephoner, but there was a lot to be done in those first few months. I would have thought you would receive some sort of communication at this point as well. I'm not sure about the UK, but here in Ireland, it's not unheard of to still have to wait around to receive your appointments by post, which seems a bit dark ages to me, but it happens. If that's the case, there's always the slim chance something was lost in transit.

If you have a number for the neurology department where you were treated, that might be the place to start if you don't have a specific MS nurse. You do need to be seen, but I wouldn't let this panic you. Treatment is definitely better sooner rather than later, but as MS is generally-speaking a slow mover, having a delay in the beginning of treatment won't likely be to your detriment in the long run.

I was diagnosed quickly, but as I opted to be in a drug trial, there was the screening process to go through and I had to wait until 30 days post steroid to begin. I was sweating that one a bit at the time, but it actually didn't cause any harm.

As for side-effects, I didn't have too many myself, but others may hop on here with a better idea if what you describe is related to the methylprednisolone.
Helpful - 0
12080135 tn?1453627571
Thanks Immi
I'll be honest I thought someone would have been in touch by now.

I've taken a 5 day methylpredisilone 500/d course, had hot flushes, headaches etc but nothing too bad.
Is it normal to still be getting side effects now? My mouth still feels and tastes like a badgers armpit, still getting the baking hot to freezing cold in minutes, urine still odd odour, upset stomach.

If I had an MS nurse I'd ask them but it's been tumble weed for two weeks now. I'd imagined I'd have an appt to talk about DMDs as per my first post, but nothing.

I guess every week this year was so full of appts with various specialists and it all galloped on so quickly, it is just odd that now I have a dx it has all gone quiet rather than getting me into "the system" and up & running.

Am I being naive? Is this just the norm and I've been lucky so far?

Sorry few questions mixed in with that lot - you were bang on with your last reply, still trying to get my head round it but no one to talk to about it.

Thx
Nx
Helpful - 0
5112396 tn?1378017983
So glad you reached out and joined UK MS. It's great because some of the information, especially about availability of drugs and who pays for what can be so country-specific. It's also a great way to find out any sort of local or community events you may be inclined to attend. (anything from a race, to an informational talk, to a support group).

The early stages post-diagnosis... I don't remember them fondly. Everything feels so frenetic, you feel like your brain is overwhelmed with all of this new information and the processing of a 'new normal'. But, it does pass. You reach a competent baseline of sound knowledge about the disease, you sort out your medication, and life returns to normal, albeit with a bit more awareness of what your body's up to on any given day. But like a lot of people, my life hasn't really changed at all.

I also wanted to commiserate with you. Because so many people have a very long, stressful, sometimes dismissive diagnostic journey, they are understandably in need of support and the ability to vent with those who understand. But...

for those of us who were swiftly diagnosed, have had wonderful experiences with doctors, and are shell-shocked in a different way -  it can often feel like we have no seat at the "MS Journey Table", like we don't have any battle scars courtesy of years of tackling the medical establishment, therefore our fears, frustrations, and challenges are somehow less 'authentic' because it doesn't fit the loudest 'MS Warrior' narrative.

A hasten to add, this is rarely encountered on this forum. I speak of real life. It's tricky to be in a room full of people who ostensibly have this major thing in common with you and feel utterly shut out because you have no complaints.

But there truly are every flavour of person with MS out there, some whose experiences will closely mirror your own. I think you're well ahead of the game by being able to recognise the lady you spoke with as likely coming from her own personal experience.

Regarding needles, I wasn't too keen myself, but I think most of us surprise ourselves with what we're able to do when called for. It may take time, but you'll find what works for you.
Helpful - 0
12080135 tn?1453627571
Thanks Karry,

Between you and Alex, I have some great advice and support. I appreciate everyone taking the time with me, I'm sure there will come so point when I can return the favours.

Nx
Helpful - 0
12080135 tn?1453627571
Alex

Thanks again for posting, you guys are so helpful on here xx

All gets a bit info overload if you're not careful doesn't it.  I've joined the UK MS Society helpline/page too. I did call to ask about dx and steroids - not sure it was helpful or not really. Helper seemed nice but more inclined to diss the specialists yet I've only had good experiences with all the different ones I saw getting to dx.

I guess she hadn't so was thinking of her own experience years ago - thats ok, I can understand that.

Really need to sit and write each possible med option with pros and cons I think, see which sound most sensible and then wait for more appt to get the medical view to overlay.

I'm a little concerned re jabs as I'm not so great with needles! Hey oh, let's not jump the gun and wait for appt to come through.

Nx
Helpful - 0
667078 tn?1316000935
I am glad you have an answer.

MS is made up of two things inflammation and nerve damage. If symptoms abate over time it is inflammation. Steroids work on inflammation in the short term. They do no necessarily affect the disease as a whole. More inflammation and symptoms are a flair, attack, or exacerbation.

The DMD try to slow nerve damage. Progression of MS can happen with or with out symptoms. You can feel fine with minimal symptoms and have the disease progress. MRIs only show white matter damage while much of the damage is gray matter which no imaging shows. This why it is important to go one a DMD early on in the disease. These drugs may not help symptoms.

DMDs will not reverse nerve damage. Some people wait until they have nerve damage to take a DMD. They can slow any further progression.

There are drugs for fatigue, concentration, nerve pain, and muscle relaxants, walking, and of course steroids.

Alex


Helpful - 0
5887915 tn?1383378780
Lol you've got to love spell check...it should say concellation not cancellation.
Helpful - 0
5887915 tn?1383378780
I think everyone has given you great advice and with all the DMD's available today you do have many choices. It's often just finding the DMD to suit the individual so I would definitely be reading about the different options before you speak to your Neuro.

It's a really s_cky dx to be given but at least you now know what you are dealing with if that's any cancellation. It's often a tough year the first after dx especially trying to decipher what is a relapse or if other things like heat, infection, fatigue or stress are at play.

May the force be with you!

Hugs,

Karry.
Helpful - 0
12080135 tn?1453627571
Thanks Immi
That's gd advice, I'm still on quite a few drugs from my lumbar discectomy.
They are daily and I was having to use the alarm on my phone when they were x4 mixes per day. Luckily just breakfast and evening now!

Hopefully can wind them back shortly.
Nx
Helpful - 0
12080135 tn?1453627571
Thanks Jen
Lots of reading to do by the sound of it, that's ok, can do that!

I'll be back ...
Helpful - 0
12080135 tn?1453627571
Thanks JJ,
I will have a trawl - thought I was losing it not being able to find the search before I posted.
It does seem odd taking drugs that are likely to give me side effects when I don't have many symptoms, and none that are that bad now eyesight I'd back.
I do realise that the next lesion however might not be so friendly.

Nxxx
Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
There are days when i really wish I could lie through my teeth, you were definitely one of those days.......HUGS!

You might think of checking out the UK MS society (imm mentioned) and consider contacting your local MS chapter for guidance too.

DMD's have been discussed many times over the years, so there would be a lot of past personal stories that could be worth reading, unfortunately the search this community box is missing again, so finding them might be a bit of a pain. The general search box is still at the top of the page, if your want to have a look at what's been mentioned before.

I know we have a health page but finding it is proving difficult, we are working on the health pages and hopefully that will give back easier access for the community, it's late so i'll have to go a hunting tomorrow......i'll be back :D

Hugs.........JJ

ps Don't worry about choosing wrong, if one doesn't work well enough for you, it's going to be okay trying another......
Helpful - 0
5112396 tn?1378017983
Think about what you'll be most able to adhere to. I'd never do something daily, for example. I know myself and that I'd always forget! A once-a-month injection's perfect for me. But someone else might be the complete opposite.

The MS Society has a fantastic website with loads of information. Here's a list of licenced drugs in the UK. http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs

And respectfully to JenPhilly, none of the CRABS injectables are immunosuppressive. They are immunomodulators. It's not just wordplay, it's a medically distinct difference. Some of the next generation monoclonal antibodies (as an example) are indeed immunosuppressants. Those of us on them need to be aware of the potential ramifications there, but the older drugs don't have the same concern.
Helpful - 0
1979418 tn?1432135441
Depending on your  doctor.   Most seem to see the tried and true 4 CRAB dmds as the first line to try. They are all shots...
Copaxone
Rebif
Avonex
Betaseron

Only copaxone is not an immunosuppressive which means you can try something like low dose naltrexone along with it.

Your doc may offer one of the oral options, but more risk and side effects and still being new, not 20 plus years of track record.

It's a very personal choice to make. I opted for copaxone, been doing daily shots for over 3 years. Also take ldn 4.5mg daily. I eliminated gluten and dairy which were symptom triggers. Touch wood but since mid 2011 when I had my first Mri, I have no lesion progression, and even one small lesion no longer shows.  Can't say this would be true for everyone but something is working, so I kept with the plan!

I use diet, supplements, sometimes alternative therapy like acupuncture and massage therapy to help with symptoms. Tho no lesions, I have quite a few and they wreak havoc when given the chance.

Do all your reading on DMD options so you know what you're talking about when you sit down with nurse or neuro.  Ask around here and other groups for experiences so you get first hand feedback.

My experience with copaxone has been pretty positive, obviously no new Lesions but I've had little side effects, mostly local skin irritation.

Best of luck in your decision... and there is no wrong choice!  

Hugs,

Jen







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