Last reply 1 month ago
Help which treatments?

Hi everyone I am a 34 female I have got my first appointment with MS neurologist next week after a agonising 3 month wait after being diagnosed I reckon I have had ms 10 years minuim.that was the first optic neuritis attack 10 years ago but nothing was picked up on MRI or eye tests back then .I had the odd tingiling,numbness and tiredness in last 10 years nothing major till begiining of last year spasms and tingiling to extremeties i had these symptoms in januaray for a few months it die down come back again in may for a few months dies down thats when i gt tested and they said ms, now recently last couple of months iv been having dizziness on a off and sme slight vision blurryness, I will find out what type of ms I have does it sound like relapsing ?apprantly I have a few lesions on brain and one on spine my question to you is thay if I am eligable what are the more effective ones out of the list of injectables and tablets or even the infusions,what are your experiances with them what ones are terrible I know everyone is different would love a lil help on my choices and nt looking to have kids right now also thank u xx

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stumbler
2 months ago

@melmel1 , have a look at this “decision aid” :-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

The latest thinking from proactive Neuros is to hit MS hard and fast with the most efficacious treatments. This would avoid the possibility of acquiring disability, whilst stepping up through the treatments.


melmel1
2 months ago

@stumbler thank u that was very useful I really appreciate the advice I dont tink I would be offerd infusions as not had any DMD’ s? but I wanted to know is Lemtrada the most powerful and if that failed does that mean the others would be useless? X


stumbler
2 months ago

@melmel1 , there are some conservative Neuros that would like you to start slowly, just stepping up the treatments once you deteriorate. This would be the basis of your argument to start with the more effective treatments.

I would say that Lemtrada is one of the most efficacious therapies, along with Tysabri and Ocrevus. Although the dosing is different with Tysabri being an ongoing monthly infusion, Ocrevus being six monthly infusions and Lemtrada being infusions one year apart.

Where do you go if Lemtrada fails? That’s really a question for the medical professionals. Stem Cell Therapy would be one option.


melmel1
2 months ago

@stumbler thank you is stem cell available on nhs or is it veru expensive privately x


stumbler
2 months ago

@melmel1 , there may be some answers here for you :-

https://www.mstrust.org.uk/a-z/stem-cell-therapy


melmel1
2 months ago

@stumbler thanks xx


stumbler
2 months ago

@melmel1 , what are you doing saying thank you at 03:00 in the morning? 😯

You should be in the land of nod!


melmel1
2 months ago

@stumbler im the worst sleeper.


stumbler
2 months ago

@melmel1 , quality sleep is so important.

Have a read of this and see if it can help :-

https://www.mstrust.org.uk/life-ms/wellbeing/sleep 💤


grandma
2 months ago

If you are hoping to have kids in the future there are certain DMT’s that are recommended if you are planning on getting pregnant. You can still have other dmt’s and come off them when the time comes to ‘try’ a 3 month gap is usually recommended but ask your neurologist when you see him. Good luck🤙👂😍


melmel1
2 months ago

@grandma thank youu😘


jadeshelley
2 months ago

I too started with optic neuritis when I got diagnosed. They diagnosed me with clinically isolated syndrome due to the fact they classed the optic neuritis as the “first relapse”. I didn’t quite understand what that meant as I was suffering with lots of different symptoms but was told they wasn’t a relapse. I officially got diagnosed with RRMS last year due to having a “2nd relapse” causing an electric shock sensation down my spine which I now know is called lhermmites. My neuro said due to having 2 relapses in 2 years it was only then he would put me on treatment, and gave me a definitive diagnosis. I would do your research into the different types of DMT incase your neuro does decide it’s time to put you on them. I’ve recently come off the injection copaxone due to site reactions and I’m about to start tecfidera which is tablet form. I wasn’t offered any of the infusion types and I have now only learnt that tecfidera is one of the best tablet forms I was able to choose from with a 50% decrease in relapses. You need to make sure you decide what you feel would be best for yourself in this, and if you do choose one and feel like it’s not the one for you for whatever reason then you can then decide to try something else which is what I am doing and I am hoping it does me well! I wish you all the best at your appointment!
Much love xx


melmel1
2 months ago

@jadeshelly thank u so much for ur reply gosh this ms is no joke lol i have been researchin and researching lol like u I like the sound of that tablet ur on and if eligable I would go for that one if not eligable what are the better injectables? Or are they pretty much the same, apart frm the reaction sites did u have fewer relapses? How r u doing with ur ms? Do u tink it sounds like i have relapsing?, thank you for your reply xx


jadeshelley
2 months ago

I was only on the injection copaxone for 6 months so was too early to tell if it was helping or not, and I had a relapse at the very start of my treatment which was just a coincidence it happened at the same time. I didn’t experience much side effects apart from the site reaction, but the copaxone was only 30% effective at the most! I’m doing okay with mine, symptoms do dye down a lot of the time but with stress obv it heightens any symptoms you feel. You learn how to cope and adapt to anything new you experience over time I guess. I would stick to reccommended sites for research as there are a lot of horror stories which aren’t necessarily true on other random google sites lol. I wouldn’t like to say what type of ms I think you may have as I haven’t got a clue how they work that out haha. It all depends on the rate of relapses I guess! Best thing to do is to get your proper diagnosis and then go from there with all the correct information you recieve, whatever form it is then you will deal with it head on and in the best way you know you can 🙂 xx


melmel1
2 months ago

@jadeshelley thank u how long do you think u have had had ms for xx


jadeshelley
1 month ago

I couldn’t tell you to be honest. The first thing I noticed was when my eye went blurry nearly 3 years ago that lasted for a few weeks which is why I went for tests for things. I couldn’t pin point anything in the past but then again I was never looking for anything until I got a shock when they diagnosed me with MS. Xx


nutshell88
1 month ago

Personally
I dont fancy the idea of having more than long term treatment so rathered starting treatment late daignosed 17 gilenya 30 years old but i tried all rebef too in the past but it didnt help me at all neurologist said
The idea no need to fill me veins
With toxic but it varie from a patient to another

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