brownk 05/02/15
Last reply 3 years ago
Officially diagnosed

Hi all,
Today I have received a letter in advance of an appointment next week basically giving me it in black and white I have rrms. I am pleased to finally have this as I had been convincing myself of all sorts. The letter gives me info of my recent brain scan I wondered if anyone could explain this…none of these inflammatory plaques however demonstrate abnormal enhancement after the injection of gadolinium? I seem to have a few things going on such as abnormal signal??
Obviously next Tuesday ill see my neuro but just wanted as much info as poss before then ☺

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stumbler
3 years ago

@brownk , it’s good of your Neuro to give advance notice of the diagnosis. This will avoid the upcoming meeting being a bit of a blur for you, if you are shocked by the diagnosis.

I wouldn’t get too involved with the technicalities of what your brain is doing. Your priority should now be how you can best manage this condition and how best to move forward.

Here’s the MS Trust’s page of publications for the newly diagnosed :- http://www.mstrust.org.uk/shop/products.jsp?catid=56 . There might be some things there that can help you.

Otherwise, prepare for this next appointment. List out all the questions that you have so you don’t forget anything. And take your partner, a relative or a good friend with you – two pairs of ears are better than one!

Your Neuro should provide details of your assigned MS Nurse. They will have more time for you.

So, sit down and give yourself some time for this diagnosis to sink in. And then think of what you want to get out of this next meeting.


tiggermum
3 years ago

@brownk welcome to this wonderful site. As Stumbler says there is lots to look at and lots to take in now you know what your issues have been caused by.

My advice for your appointment with the Consultant, would be to make yourself a list of questions. Make sure you ask them all, and make sure the Consultant gives you the time and answers them all.

Good luck, and keep in touch


us-emma
3 years ago

@brownk,

Welcome πŸ™‚ this is a great place to find support & ask questions. So please ask away.

In answer to your MRI question- it’s pretty simple. The MRI takes scans of the brain from many angles and complies this into grey & black pictures you and your doc can sort through.

Where MS has caused some havoc they can point out ‘lesions’ on the picture (can be hard to see, think so a baby sonogram- once the tech points out a few things it is easier to make out) they can be a patch of white or black (black ones are sometimes called black holes and are usually more established lesions).

So anyway you have all these still black, white & gray images. Your doc can point out what they see of significance. Does all that make sense?

So in the last part of the scan they give you a radio-opaque dye by IV and the do a quick 5 min scan. Do you remember that?Gadolinium is the name of the chemical dye they inject in your IV.

This dye will attach to any lesion that is currently active (aka ‘hot’) where MS is currently- in real time- causing damage and shows what part if the brain that has inflammation.

Under dye lesions that are active Light Up or Enhance to show active disease. So if you were having a relapse/exacerbation the scan would light up the lesions where the disease is active.

Old places of damage that used to be active but now show just damage are the white non-enhancing lesions or the black holes of damage.

Your report says “none of these inflammatory plaques however demonstrate abnormal enhancement after the injection of gadolinium”

So they see lesions on your scan but none of your lesions (aka plaques) are enhancing- this is good. πŸ™‚ it means you do not have a current exacerbation in the area scanned (you can have lesions in the spinal cord & many times they do not scan the whole cord). It could also mean that if you were just treated with something like IV steroids that they calmed the inflammation.

The bad news is that they did see plaques/lesions and you do have MS. Please talk with your doctor about strong therapy to combat this disease. MS is no joke and things get progressive worse as you accumulate more lesions. There is just no way to sugar coat that fact.

I highly recommend Lemtrada as the best treatment option available. I traveled to Dresden in 2014 to get this medicine (not yet approved in US at that time, it is now) and it has helped a lot. But more importantly it works Best in newly diagnosed patients like you. It is available as first line therapy in the UK on your public system.

Lemtrada is a Highly effective treatment given by IV that takes just 8 days of medicine (5 days at first, then 3 days 1 year later). In the meantime you go and live your life & forget about MS. Long term data is very strong that you may go 5-10 years without needing more medicine.

Halt this disease before you get more plaques, more damage in your brain & spinal cord that you can’t recover completely from.

So they may talk to you about daily pills, weekly injections or an IV once a month- there are many ways to combat MS with medication but the strongest, most effective way is Lemtrada.

One oral pill a day might sound east but I encourage you to read this https://shift.ms/topic/gilenya-weakness-fatigue/ Gilenya is a pill you take once a day but is not effective & has many side effects as you can read other peoples experiences.

If you have questions please ask. If you want to know more about Lemtrada. I wrote a blog about my experience at lemtrada.blogspot.com in the UK I think the end is co.uk instead of .com

I have also taken most of the medications available so I am happy to answe questions about those. I have had MS for 11.5 years.

Take care, stay active and fight this disease with strong medicine- don’t let MS take away anything from your life- fight back πŸ™‚


brownk
3 years ago

Thank you all for your comments..I am def going to list some questions and will wait with interest to see what treatments are offered. @us-emma thank you I have read about lemtrada and will be talking to my neuro about this I wonder if it’s always an option?


Anonymous
3 years ago

Listen to @us-emma! The neuros will try to put you on a path of progressively stronger treatments over the years. Don’t make that mistake. Take Lemtrada to give yourself the best chance of having a life unaffected by MS. I remember when I got my DX. It can be overwhelming. Don’t be! Take control of the situation and insist on the most aggressive treatment. You will be the one that has to live with the results! You will do great!


us-emma
3 years ago

If you are in the UK it is first line in newly diagnosed. Some providers in the outlying areas may not have experience with Lemtrada yet (I think NICE or whomever added it as covered 1st line in May 2014).

So your doc might be hesitant. Others will be using it first line for all patients to prevent disability because it is strong enough to do that.

It was approved in the EU Fall 2013.

This post reviews the potential side effects of Lemtrada you should be aware of, but also on my take that the benefits out weight possible side effects:

http://lemtrada.blogspot.com/2014/12/efficacy-of-lemtrada-do-people-get-it.html

It’s a big important decision. If you go in with knowledge and an idea of what your options are you will make a better decision for you.

If you have questions about what meds are out there I can write up a review of efficacy vs side effect and include how each is taken. I don’t mind doing this at all, if it would help you.

Many Blessings πŸ™‚


Anonymous
3 years ago

My perspective is that Lemtrada is a game changer and that we are so lucky that it is finally available. I get mine this month! We have more than enough experience with MS and the other available treatments to know that is true. If you are fortunate enough to live in an area where Lemtrada is a first line treatment (which means you don’t have to fail other treatments first), don’t let yourself get caught up in the flood of information about competing treatments from big pharma without leveraging the knowledge of patients that have already lived it.


aussiekylie
3 years ago

@us-emma thank you for explaining the mri. My neuro didn’t adequately explain mine and I actually learnt more from a link on a forum. Until I read the information on the link I honestly thought I had a lesion on my T2….don’t even know what I thought that was. Until I read that T2 is a method used during the mri, then it all made sense.
I would be interested in the review you offered on efficacy vs side effects if possible.
Many thanks


brownk
3 years ago

@us-emma I would love the review please I just want as much info as possible to inform myself, make good choices and to show my neuro I’m ready for tackling my ms full on.
My mri’s have shown I have numerous lesions brain and spine so I’m thinking I’ve had ms a while, I’m 36 now. I hope lemtrada is an option for me I really ddo.This may be one for my neuro but I do have an under active thyroid so I hope this doesn’t rule me out for any reason.
Thanks Emma you are so very knowledgeable and your just one of the people on this site that it make it so great. I have joined a Facebook group recently but have removed myself as it frightened me this group continues to be supportive informative and so friendly. Thanks all x


us-emma
3 years ago

Hello All,

I am going to work on this list today. I may not finish and if so wont be able to work on it until Sunday- house guests.

My background is as a health provider and researcher (in the field of HIV). When I was treating patients in clinic (2000-2007) it was my goal to provide researched backed information on medication choices with enough detail of good/bad and reality that a patient would be able to make their own INFORMED decision. This is very important to me- that treatment is the patient’s choice and that the choice is based on facts they understand.

So this will be my attempt here. I will make the chart into 4 categories I believe are real- Highly Effective Medications, Effective Medications, Moderately Effective Medications and Least Effective Medications.

These category choices will be based on scientific research and not my personal opinion.

I say this because my categories might offend some people and I wanted everyone to know these are research based, not opinion based categories.

I am always happy to clarify information presented here. If you have any specific requests of things to cover in this review please let me know. I haven’t started but I plan to include at least: effectiveness, side effects, dosing routes.

Off to work!
EM


us-emma
3 years ago

Ps- @stumbler I plan to make a slide share presentation for this due to amount of information. I may need your help to make sure the link posted here works for everyone (ie .com vs .co.uk or whatever) my IT skills are minimal!

Thanks!


stumbler
3 years ago

@us-emma , you put the link up and I’ll amend/fix it if it doesn’t work. All of your previous links have worked. πŸ˜‰


us-emma
3 years ago

@brownk,

I am working on this exhaustible chrt, I just wanted to let you know it is taking longer than expected. I want yo make sure to present each drug fairly and completely.

I am learning a lot myself.

My biggest take away- several drugs have horrible everyday side effects AND PML risk- but not Lemtrada.

Lem has infusion reaction which occur in the first week while you are getting the infusion but then all are out of you system in 30 days. Then you go through 3 days of tmt the next year.

All the rest of the 36+ months Lem is working for you you have NO daily side effects- but do have the risks of thyroid troubles 30-35%, bleeding disorder 3% and GoodPastures .03% (vary low but most serious of the 3)

I knew tecfidera carried risk of PML but Gilenya does as well. The scary thing about PML is that it kills 30-35% of victims and leaves the others mental cripples in nursing homes. With this info I am completely shocked docs have any worries about Lem. The thyroid issues you get at the same rate as Ty and Tec and never if so rarely fatal and so easy to treat.

The struggle that @hannah15 and @tracyd are experiencing is appalling. I hope you live in a different area from them!

Take care and please cite me when you receive news of your meeting tomorrow.


Anonymous
3 years ago

@us-emma , Novartis still maintains there is no risk of PML associated with Gilenya. Since, I have taken all of the drugs in question, I don’t have a dog in that fight. I am just putting it out there that Gilenya definitely comes with risks, but PML may not be one of them. See the following: http://www.medscape.com/viewarticle/832307


Anonymous
3 years ago

@us-emma Did your previous post miss the word “thyroid” ?


us-emma
3 years ago

Yes thanks for that- through replaced thyroid. Is there anyway you can fix that @stumbler? I would want to confuse people. It is in the 5th paragraph of the 6:12 post.

Thanks for catching that- tablets are handy but I make many pre errors on them.

Entertaining my 12 year old hyper nephew last weekend was a blast but completely exhausting πŸ™‚


stumbler
3 years ago

@us-emma and @mbrsinc , typos corrected. Don’t you just love predictive text and autocorrect! πŸ˜‰


Anonymous
3 years ago

@stumbler and @us-emma ,

We wish! It’s after 3 am east coast time in the US. I think mistakes are probably due to bleary eyed fatigue. I would say something about the software; but I don’t want to start another rift between the hardware and software guys. πŸ™‚


tracyd
3 years ago

@brownk welcome to Shift *waves*

The community here is great, so much information from knowledgeable people who are all experiencing MS in it’s many varied forms.

You’re about 2 weeks behind me I think in terms of diagnosis and treatment recommendations, I saw my Neurologist last Wednesday, I’m nearly 43 and newly diagnosed, like you I have lesions in multiple places in my brain and spine which are currently very active and annoying πŸ™‚

I’ve been told Lemtrada is certainly the treatment they was to give, however some hospitals are very slow in getting the training and process in place for providing Lemtrada so @hannah15 and I are both facing challenges with our local health authorities on being able to get started with the treatment.

My neurologist has asked for me to be screen for Tysabri in the interim so that if the Lentrada treatment is delayed I have an alternate treatment in place in the interim. Ask your neurologist about where the treatment can be provided as soon as the screening is done, if possible perhaps travelling to somewhere a little more distant will allow it to start sooner.

Hope you enjoy the community xx
Tracy


us-emma
3 years ago

@tracyd,

Is that something you can do- vote with your feet? Move to a more inclusive area?

I am unsure if your system would frown on this, but I do think its a great advantage of forums like this- linking up patients with treatment info they may not have.

Best wished to all,
Emma


us-emma
3 years ago

@brownk,

Did you have your meeting today? How did it go?

Emma


tigerdes
3 years ago

@us-emma stunningly helpful as always!

@brownk mbrsinc is right about Lemtrada being a game changer. I was part of the phase 3 trial and was treatment naive (ie lemtrada was the first treatment I received). I’ve posted before so here’s the link to my last post https://shift.ms/topic/how-lemtrada-changed-my-life/

Stay strong, keep active and I hope you get the treatment that is best for you! Take care. T


brownk
3 years ago

@tigerdes thank you for sharing I have just read your previous post and feeling so positive.
@us-emma my meeting went well. My neuro talked through my scans and the treatments and lemtrada is on offer! He said if I decided on this I would need to see him again and would be the first in Lincoln at his clinic!I rushing a bit this morning getting ready for work kids etc but will type later ☺
Waving back @tracyd xx


tigerdes
3 years ago

Great news @brownk please keep us posted πŸ™‚


tracyd
3 years ago

@us-emma I’m looking at whether I could have the treatment at somewhere in Berkshire or Oxfordshire, I’m pretty sure that it could be offered at either the Royal Berkshire hospital or the St John Radcliffe in Oxfordshire, I guess that would depend on whether they would take someone from Hampshire, if it came down to it then potentially relocation would be an option but selling our home, buying another, potentially both myself and my husband having to change jobs would all need to be taken into consideration.

Time will tell, more pressing things to worry about this week, I’m a bridesmaid at a friends wedding on Saturday so there’s a certain level of preparation ‘grooming’ required πŸ™‚

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