Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


us-emma
1 week ago

Hi Danielle,

I was diagnosed at 29, but that was many years ago.
.
At this point in your disease you have the largest brain volume you will ever have. MS is now destroying your brain and will continue to do so your entire life.
.
I am a nurse and I know this is hard to hear. If you have not yet heard this yet- we have a saying in MS that “Time is Brain”. Meaning the longer you have MS, the more brain you lose- even on MS medication.
.
So you have the opportunity with your your age and newly diagnosed status to preserve the brain you have now. The way to do this is to take a Highly Effective Disease Modifying Drug or treatment. Here are the top 3:
.
1. Bone Marrow Transplant using the BEAM protocol (BEAM just stands for the drugs they use before the transplant. You get your own cells back after they have been washed- so you don’t have to worry about rejection.
.
This protocol has been in testing for 20+ years but may not be available everywhere in the UK. The US will start a new clinical trial to compare to other highly active DMD in Jan 2020.
.
2. Lemtrada. This is a medication you take for 5 days. It is out of your system within a month. You take 3 days of the same drug 1 year later.
.
With your young age and newly diagnosed status both of these have the potential to offer you a cure or at the very least long term suppression of pain, fatigue, muscle spasms, blowed and bladder problems, eyesight problems, walking difficulties, swallowing issues- just to name a few of the horrible things MS does to us.
.
3. Mavenclad. This is less effective than either of the top 2 listed above but better than all the rest in the field.
.
The EMA is starting to restrict access to Lemtrada and BMT May only be available at a few centers (don’t bother traveling for BMT- they are not using the strong BEAM protocol in other countries the last time I checked).
.
So do the investigation in your area about your options. I will help in any way I can. I hate to see a young person unnecessarily face the grim effects of MS that those of us who are older have had to. Your MS deterioration is highly preventable at this stage- seize the opportunity to live a normal life!
.
Take care,
Emma


stumbler
1 week ago

Hi @ danielle24 .

Be careful of using Dr Google. You need to avoid the horror stories, so stick with reputable websites like the MS Trust and MS Society.

Otherwise, live healthily, eat healthily and, most importantly, avoid stress.


nutshell88
1 week ago

Hello @danielle24
My name is Reem Im a lady from Saudi Arabia daignosed 2004 age 17
im fine not disabled any how tried everything in life atrophy in 2014 it hasnt changed my life quality i finished highschool uni then learnt english in Scotland
MS cant stop you if you live your life as nature requires fruit viggies meat water build your body right
keep it clear of smoking snd alcohol

I learnt between me snd myself thst humans are weak
all of them ms patient might die of ms age 70 or 80 another petson had aleays been struggling with hidden blood pressure or cholesterol diabetes ect
all humans vulnerable from their body degrading map

MS couldnt and still cant stop me i cover my face outside under 50″ my face never got any relapse its inner strength too
be determined in convencing yourself it cant break you


danielle24
1 week ago

Hi guys thanks so much for telling me your stories and for the help. It’s been a bit of a crazy couple of months but feeling much better about it all now. X


rachiervn1983
1 week ago

Hi Danielle,

I was also diagnosed at 27, nearly ten years on I’ve only had one relapse and remain DMT free. Pm if you need to chat, I know how scary diagnosis can be so you know where I am x


mommaflores6
1 week ago

Hey danielle
Im 28 and have just been diagnosed however my symptoms have been going on since I was 17 it was a big punch in the gut when she said I had R&R MS still kind of confused about the whole thing and N shock still i need a friend


vixen
1 week ago

Hi @danielle24. I have been diagnosed only three years but am way older than you. How is your day to day health? Yes, definitely only read reputable and official sites, or it will drive you crazy! The search tool on here is really useful too and you tend to get a range of responses. Check out the map function to see if there are others in your area. As to the comment of the first person to respond, I would say that everyone’s brain is gonna degenerate over time, due to the fact that we all end up getting old! You will be OK but do allow yourself the time to process things properly, most people will say that it often takes up to a year to come to terms and make adjustments. Lots of love and support x


aoifemm
5 days ago

Hey! I’m 25 in a similar situation. It’s a bit of a nightmare, but we’re so lucky in how many effective treatments there are these days and how fast research is moving relative to other health conditions. Onwards and upwards I guess!


rel12
5 days ago

Hi @danielle24! 🙂

I’m also 27 but diagnosed last year so I also try to read a lot on MS. These forums are great to connect & to help each other out. Everyone has a different experience but it is awesome that we can sometimes relate to the many stories/posts. Feel free to reach out with questions or to chat!

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.