Advanced MS

[lindaz9]

I was diagnosed about three years ago with advanced MS. Has anyone heard of this and do you know what it means? I have been only on Tysabri and my MRI's have shown no changes, but I don't feel like it is getting any better, especially my walking. I feel like my symptoms are getting worse. Can anyone help with any input? Thanks.

[greaterexp]

Of course, I'm no doctor, so I can only offer ideas. We've been discussing the different supposed types of MS, and we've all heard so many different explanations for each one. I'm not sure science has adequately answered those questions. I guess the bottom line is that we all have MS of varying types or degrees with widely varied symptoms. If you feel that you aren't responding to your treatment, it's a good idea to ask your doctor about why you've been placed on your particular DMT and then ask if anything else might be more helpful in controlling relapses or progression. If you aren't getting satisfactory answers, it might be time to seek another opinion or try to get to an MS center.

I wish you the best with getting clear answers.

[jimeka]

I agree with greaterexp if you are not happy with your dx and you want some clarity, get another opinion from someone who knows about ms. Let us know how you get on, Blessings Jimeka 🦋

[JTZES]

Your doctor has put you on the best percentage DMT. It averages over 99% of stopping new lesions. It doesn't repair any existing lesions and doesn't stop the current lesions from getting worse.

Did your doctor run a JVC blood test prior to starting you on it? If your JVC positive you need to stop the Tysabri has a high potential to cause PML a severe brain infection that mimics your current symptoms.

I'm not a doctor either but have done a lot of research regarding DMT'S since I am JVC positive.

I don't want to bring you down or cause panic. I just want to make you aware of things. My doctor didn't test me for JVC until my third year and my current doctor isn't ruling out the fact that I currently have it because like you I'm not getting new lesions but my current ones are growing and getting worse.

I wish you all the best!

[MyNameIsVictory in reply to JTZES]

I agree with above also. It does a phenomenal and remarkable job at preventing new lesions and the textbook defined clinical relapse—- but that in fact is half the battle for many of us. Previous damage can wax and wane symptomatically with wide range of variability. I was diagnosed 3 yrs ago with extensive lesions only after a profound loss of function after a surgery occurred but had in fact demonstrated early lesions 6 years prior on and MRI that produced minimal symptoms of numbness and tingling the neurologist did not correlate with early MS. Unfortunately the disease progressed substantially over that period of time. Following initial steroid therapy and slightly JCV+, I was started on Tysabri with positive lesion control but progressive symptoms that wax and wane. My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to Tysabri (I appear clinically like I have leukemia/lymphoma) due to the drastic effects of Tysabri working like its “supposed “ to. In addition to the symptomatics I stay sick and have developed an extremely heavy allergy burden... To keep on it or not is the “Question?”

[JTZES in reply to MyNameIsVictory]

Victory,

I worked in Home Health care for many years about 20 years ago. I was a business manager but made it a point to meet all of our patients. Cancer, Alzheimer's, Dementia and so on. Many of my patients were on such strong pain medications they didn't know they were even alive.

At that point I made the decision that I'm going to base things on quality of life versus length of life.

I completed my living will and DNR back then.

It sounds like your at that point. If the Tysabri is making you feel that bad and if you stop you could feel better than the side effects your having and live a better quality of life it may be the way to go.

Yes you're giving into the MS but having a period of time feeling good seems like a good tradeoff.

This is just my belief it may not match yours but it's different way of thinking.

[MyNameIsVictory in reply to JTZES]

Following military retirement after 24 years, relocating to Florida, and being referred to a MS Center of Excellence at the VA, I have since transitioned over to Ocrevus with subjectively much better physical and clinical symptoms to include labs since Dec 2019. Objectively, still anemic and being followed closely for that but otherwise anticipating what the MRI will show after having been on it for a year. My second full Ocrevus infusion is in early June! 😉

[MyNameIsVictory in reply to MyNameIsVictory]

Following military retirement after 24 years, relocating to Florida, and being referred to a MS Center of Excellence at the VA, I have since transitioned over to Ocrevus with subjectively much better physical and clinical symptoms to include labs since Dec 2019. Objectively, still anemic and being followed closely for that but otherwise anticipating what the MRI will show after having been on it for a year. My second full Ocrevus infusion is in early June! 😉

[Guava69]

Hi lindaz9 I was diagnosed almost 9 years ago and was told my ms is "aggressive"(aren't they all 🤔). I've been on Tysabri for 7 years with a positive JC virus in the past few years. When asked why continue with Tysabri.. Well it has been doing it's job.. keeping the gate shut on my ms. I haven't experience any relapses or new lesions. However like most of us prior to diagnosis a lot of damage as already been done by this ugly ms. I personally experience walking, fatigue, balance, cognitive and so on. So having no changes on your MRI is great👍 Just as previously advised speaking with your neurologist would be beneficial especially if your symptoms are worsening. Stay strong. Peace and blessings ☺️🙏🏽☺️

[agate]

lindaz9 , my guess is that advanced MS means that you must have had it for quite a while--long enough for there to be older-looking lesions on your MRI. They can tell by the way a lesion looks whether it's new or older, I'm pretty sure.

But "advanced MS" might also refer to your symptoms. If you had a lot of obvious signs (abnormal reflexes, abnormal test results) and symptoms, some neuros might decide that that is "advanced MS."

A disease-modifying drug like Tysabri might not make you feel any better but the hope is that it won't make you worse. Without the drug, you could be getting worse. I've heard that sometimes a person's symptoms get worse but the MRIs show that the situation is stable. Nobody seems to know what this happens.

Just my take on it, and I'm no expert. My MS was diagnosed in 1980 and is SPMS.

[Raingrrl]

Hi lindaz9 ! I’ve not heard the term advanced MS before so I’m not any help with that.

However, I can talk about Tysabri from experience. I was on Tysabri for 5 years all while being JCV+. It kept me stable. My neuro regularly monitored my the level of JCV in my blood which is how you monitor PML risk when you are on Tysabri and you are JCV+. I hope you are being treated by a neuro who specializes in MS because they are generally the most informed about the disease and it’s treatment. The function of DMT’s are to stabilize your disease. They don’t fix anything. Sometimes your body can repair itself while the DMT is stabilizing you. We all experience MS a little differently and different DMT’s work differently for different people. There are so many variables!

Please discuss your concerns with your neuro. The decision to continue on Tysabri or not needs to be made between you and them. None of us here can assess how much your symptoms have changed nor can we determine the significance of the worsening you are experiencing. That needs to be done by your neuro. The protocol for administering Tysabri includes blood tests to monitor the level of JCV+ in your blood. (The index). Hopefully that is being done for you. Good luck! Let us know what happens.

[JTZES]

Thank you for the added Tysabri information.

I have worked with 3 MS specialist in 2 different practices. When I've brought up Tysabri has using it has a DMT they have shot me down.

I'm on Ocrevus know and it seems to be doing a good job on new exacerbations.

I have been on all other DMT'S except Tysabri and it's nice to know there was still another possibility if needed.

Thanks for sharing!😉

[kdali]

Advanced MS is also known as end stage MS. I think you deserve some official clarification with what exactly places you in that category (you can google the criteria for MS subtypes, but be aware that your label can change over time), and what is or is not expected with Tysabri for you.

[MyNameIsVictory]

I agree with above also. It does a phenomenal and remarkable job at preventing new lesions and the textbook defined clinical relapse—- but that in fact is half the battle for many of us. Previous damage can wax and wane symptomatically with wide range of variability. I was diagnosed 3 yrs ago with extensive lesions only after a profound loss of function after a surgery occurred but had in fact demonstrated early lesions 6 years prior on and MRI that produced minimal symptoms of numbness and tingling the neurologist did not correlate with early MS. Unfortunately the disease progressed substantially over that period of time. Following initial steroid therapy I was started on Tysabri with positive lesion control but progressive symptoms that wax and wane. My MS specialist is hesitant to change therapy due to the extensive disease already present even with the persistent immunsuppressed state I am clinically in due to Tysabri (I appear clinically like I have leukemia/lymphoma) due to the drastic effects of Tysabri working like its “supposed “ to. In addition to the symptomatics I stay sick and have developed an extremely heavy allergy burden... To keep on it or not is the “Question?”