Last reply 9 months ago
Confused!!

Hi everyone, I had an mri scan back in January. It was just a normal scan – no dye was used.

So I eventually got the results a few weeks ago. The letter started with ‘no change since 2015 scan’ I was so scared to open it I was unfolding it as I read. I was relieved!!

The the second paragraph started with there are 3 new lesions!! WTF!! So there clearly has been a change! What would you make of that?

It then said that based on my results he didn’t think I should change drugs (I came off tec as it wasn’t working out – so now I am on nothing)

He said the thing to focus on is that I have been relapse free since 2014/15 – but I have not been symptom free as often suffer from chronic pain and fatigue, pins and needles, and numb toes and finger tips!

I don’t really want to be on any drugs, the only thing I would consider is lemtrada but where I live that is highly unlikely as I have already been refused once on diagnosis.

Do I go back to him and ask him to explain more as it’s contradicting?

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Anonymous
9 months ago

Hey @hollylb10

That is confusing! I don’t understand either, I’ve been given some conflicting information myself recently so I get how y. I’ve decided to make a list of my questions and how I’m confused in advance of my upcoming appointment. I would suggest you do the same. I’m guess they are used to questions at appointments . I guess as long as you explain the confusion they will be happy to help. I would ask about Lemtrada again I don’t see why you have been refused.

All the best xxx


stumbler
9 months ago

@hollylb10 , I don’t know whether the comments on this post help:-

https://shift.ms/forums/topic/progression-with-no-new-lesions ?


hollylb10
9 months ago

Sorry @stumbler that does not really help. Although I have not read the full post, but I don’t want to think about progression. I’m just confused as to why he says there is no change, yet there are 3 new lesions!


lilbird
9 months ago

Hi @hollylb10 that does seem very confusing, I’d definitely go back and talk to someone to try and clear things up if I were in your position. It doesn’t seem to make sense and certainly doesn’t do anything to give you confidence in your medical team if what they are telling you contradicts what you know about yourself. It is possible you could use the new activity on your mri as leverage towards getting lemtrada though if that is something that you want to seriously consider so maybe that’s a positive? Sending virtual hugs and a little virtual fist waving at the frustration of having to deal with these extra unnecessary stresses! 😊


stumbler
9 months ago

@hollylb10 , I didn’t think it quite addressed the issue!

I’d agree with @lilbird above. See if you can have a chat with your MS Nurse. They normally know whether your Neuro can “cut the mustard”!


hollylb10
9 months ago

Ah!!! So confused, I think I misinterpreted the letter – not sure! But just spoke to nurse who wants me to consider Plegridy or Copaxone. I just don’t know what to do!


stumbler
9 months ago

@hollylb10 , Plegridy and Copaxone are both first line treatments. I would argue the case for Lemtrada again. Or possibly Cladribine (Mavenclad).


hollylb10
9 months ago

@stumbler I feel like I have so many decisions to make! I have two children already, but we often think about having a 3rd. I have so many things to stop me – one being medication and the other being that I don’t want to risk passing this horrible disease on! My MS came from my dad side, my great aunt had it. But my husbands aunt also has MS so I feel like now my children are at high risk 🙁


stumbler
9 months ago

@hollylb10 , that is a big consideration, if there is the possibility of having another child in the near future. It would be wise to keep your options open.

Whilst you children would have a higher risk of developing MS, than the “man in the street”, this increased risk is very small.

In any event, if medical science continues at its present pace, MS will become as inconvenient as a cold!

Don’t let MS determine you or your family’s future.


aabreu
9 months ago

@hollylb10 the doctors don’t know what causes MS. A firm genetic link has not been established. Your children may be at a slightly higher risk from what I remember reading. MS stinks, but I’m glad to be here. You know? And, I really believe a cure is within reach. If they connect a few more dots, the cause will be found.

If you are still showing new lesions, it is time to consider a new therapy and or new doctor. I found a hospital that specializes in MS. If you’re in UK, I’ve heard of Bart’s. They seem good. And as @stumbler said, ask about Lemtrada and Cladribine. And don’t forget Ocrevus.


job777
9 months ago

Hi Holly. I know this diet would suck but I soaked up YouTube videos for like 30 hrs since I’m basically bed ridden and so much seems connected to supplements and food intake.
Vitamin d, coq10, calcium/magnesium,omega 3 fatty acids, b vitamins, may as well take vitamin C too.
And a good probiotic and also Then try cutting out all gluten and dairy. Sounds really hard but so worth a shot. I’m no Dr but the videos are astonishing how many ppl with MS have no flare ups when going this route instead of filling it with Drugs. Atleast consider trying this first.
Hope it helps.


hollylb10
9 months ago

If you have read the overcoming ms book it is very clear that there is a genetic link, but there are environmental/health factors that trigger it.

@job777 thank you, I will take a look. I have been following a gluten free, vegan diet for a while but recently I have not been so strict and had a few slip ups which is what I blame the flare up of symptoms on. I also normally drink turmeric tea and supplement with flaxseed oil and again I have not been keeping this up either 🙁


potter
9 months ago

I think the scientist have a lot more research on genetics before you can truly believe there is n’t a genetic link. My family on my mothers side has ALS and MS in it, I had two aunts with MS, the rest of the family died of ALS including my mother. We have had a total of 14 close family members die of ALS including my younger sister in September. When I was diagnosed my neuro checked me for ALS and MS he said they were closely related diseases. We didn’t know we had these disease in our family until after I had my son. I would have adopted if I had known, my son and his wife aren’t having any children. You could get your baby fix by working in the church nursery, I use to hold a friends baby that was enough for me. Potter

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