‘MS Does Not Remit’ – Call to Change RRMS Name to Relapsing MS
MS does not remit and the out dated term causes many people to delay taking medication, says Dr Patricia Coyle, Founder and Director of Stony Brook’s MS Comprehensive Care Center.
Dr. Patricia Coyle.
Last week, at the CMSC Annual Meeting in Maryland, during a live-streamed presentation covered by Multiple Sclerosis News Today, she said: “MS doesn’t remit.”
Now, that is peculiar for a disease that is divided into different types, with the most people with MS having the Relapsing Remitting variety.
This week I caught up with Dr. Coyle and put this conundrum to her.
She explained: “RRMS is the major type and the one in which, between relapses or attacks, the patient appears to recover completely and is absolutely stable but it is wrong to say it stops.
“In reality, the disease has not stopped at all but continues to cause ongoing damage. It goes on silently damaging the tissue of the central nervous system.
Disease hides but does not remit
“Many people take this so-called remission as a sign that the now hidden and disease is doing no harm. So they decide not to take medications that would help protect them from the silent attack on their nervous systems,” said Dr. Coyle.
Asked if she would rename RRMS, she readily agreed that she would. “Relapsing Remitting MS is an old name from many years ago. It is a misnomer and is misleading. It really is time we changed it.”
To what, I asked. “Relapsing MS is a better title,” she said. And I think she is right. That name says that you have MS all the time but at certain times you will have relapses, when you will get worse. “This disease doesn’t burn out, it does not remit; let’s call it Relapsing MS,” she added.
But how do we achieve that change? It may be a long road but Dr Coyle suggests that it could start with the National MS Society in the USA. From there, I see it going to the International Federation (MSIF) and to MS societies and associations throughout the world.
Of course, it won’t happen overnight but wouldn’t it be great to see Relapsing MS become the new official and more correct name?
Multiple Sclerosis News Today also interviewed Dr. Coyle at the CMSC. You can watch the interview in its entirety here:
Comments
Linda Reymond
Yes get rid of remit. But I think relapsing is a weak word to describe an attack.
Shasha
Hi, I just say my MS kicked in and then I heal as I get rid of the hidden gluten/dairy/soy/sugar/GMO...keep my diet strict. I don't heal 100%. My MS may come back to the same location if it kicks in again due to low oxygen in my brain due to Celiac. Gluten may: lower nutrients absorbed...then cells are not made right to work right to burn oxygen/make the immune system not work right/hurt the thyroid/not let the liver detox well/lower the immune system so other infections may happen and more. Antibiotics/Lyme may hurt MS people. Amour thyroid may help the thyroid which gluten may make antibodies for. TSH is not to be gone by...only free T4 and free T3.
Susie
Celiac and MS are not the same. Maybe some similarities, but many different symptoms and possible causes. Healthy food, exercise proved to help. Specifics foods not necessarily proven to reduce most symptoms. We must take a proven MS disease modifying therapy drug.
I totally agree name should not include remission. I have been diagnosed for 26 years and am doing relatively well. My symptoms are not usually very visible, but never in complete remission.
Emily Foster
I got diagnosed with RRMS at 17 and every attack I have had I am left with something may just be small but I never come heel fully. Cognitivley my grades at uni went from staight High Distinctions and Distinctions and now I am on Pass and Credit as I find things more difficult. The name needs to be changed, MS does not REMIT.
Norma I Torres
It doesnt make a difference to me what you call it, its still MS
S
agree!
Mustafa Demirel
Obviously this article is made by pharmaceutical companies. Today we can see many examples of healed people and reversed their MS symptoms completely. Instead of searching for the cause and understanding how this people got rid of their MS it is very smart to promote most toxic drugs in the market. Weldone so called DR and the editor!!!
Shasha
Hi, Yes...trying to get MS people on drugs early before they get a chance to change their diet and try supplements of nutrients they may be low in or try detoxing etc may make MS people rely on the drug which may not help much since it doesn't fix the root cause. If a person is low in zinc and they don't take it, how can an MS drug work that doesn't raise zinc. MS people may need detoxing/thyroid medicine/Paleo or Celiac diet/LDN/vitamins/good oils/probiotic/Vit B12 methylcobalamin shot or intrinsic factor/Lyme help or help for other infections...ozone or herbs..not antibiotics etc. Getting more sunlight/exercise/good water/eating organic/Vit
D3/fish oil/Mg/zinc/Vit C/evening primrose oil/5000mcg of biotin/EDTA IV chelations and more may help. Each thing a person tries that betters their diet/health may help MS like a miracle. Some MS people may only need to change their diet..stop eating food with a label and eat organic. LDN may help since it helps block hidden gluten. There are many things MS people can do to make their health better. It is not hard. People used to eat like this before modern food was invented which may hurt people. I eat the Asian/Celiac diet and take supplements/detox etc. MS people can heal in their life time if make the effort.
My MS is suppressed and can come back in the same location if I get hidden gluten etc. An MS person may get worse daily if they eat the same food daily that is hurting them or if they have Lyme and don't get natural help for it. MS people can heal fast. Research money for drugs doesn't fix the root cause. Lowering the immune system may allow cancer. I need to daily keep my diet/supplements etc going..can't stop. My mitochondria are hurt, but people may heal more each day instead of get worse each day as they eat more natural/no gluten/GMO etc and take supplements for missing nutrients. Hair tests tell mineral levels/heavy metals. Detoxing/eating well should be a normal thing people do.
Mark
Dangerous comments, there is no sure for MS, changing diet won't cure the disease and evening primrose oil is not a cure for anything
S
Oh, gosh. Let's not waste money on naming, names. Put that money toward a cure for G-d friggen sakes.
Kathy Elaine Vilce
There is no one size fits all effective way to address the issues that come with the current levels of MS. I agree with renaming of condition. Relapsing MS is appropriate. Thus far no cure has been noted symptom severity comes and goes. I agree with including natural healthy diet, supplements, stress reduction, take notes of your own issues with MS, don't be trendy in therapy or dietary choices.
Nikki the snowflake
From all I've read, RRMS is perhaps more appropriate to be called Relapsing Partial Repairing MS! What a mouthful that would be! The article seems to be saying actually Progressive Relapsing MS is what 85-90% of us all (MS peeps) have just with different individual ability to heal when not in relapse. Progressive MS not showing the extreme relapses so needing different treatment. I'm actually liking a name I stumbled over recently 'snowflake' illness i.e. as with snowflakes no two MSers are the same. Frankly, I just want a cure, for all types, if it means this knowledge helps to find it great, I just say I have MS!
C
Well said people, I have MS. Sure I am better than when it started 26 yrs. ago. Basically because I chose to be better than what was happening with muscle strengthening exercise and a low carb diet. I now however have abused my bladder long enough that Botox was the last step. Every case is unique, we are trying to find comman-alities to keep ourselves sane. I was told give it 10 years for a cure. Hah, it has been 30 and only hit and miss treatments. Lets get real!
Christina
Was dx feb 2017 due to a lesion change.
Copaxone did not help & in 10th week huge bister so neuro stop treatment.
All lesions in brain 18 in PERIVENTRICULAR all small no spinal lesions.
Balance problem legs collapsed numbing hand feet spasms trouble swallowing muscle weakness,cognitive & worse is the fatigue sucks all my energy.
Now being told my lesions should also include spine & my symptoms aren't MS because they never go away.Now their running more test. So here I go again..
Totally bewildered..
Just had test for optic neuritis,next test is to check nerves in muscles, parapsycharitrist to check COGNITIVE & John Hopkins neuro wants Sleep Study redone in Maryland I live in pa was told 2015 obstruction sleep Ecessive daytime cpap & obustrive was morr then the central sleep apnea numbers & were dismissed
Anna Strawe
I have been talking to a lot of other MSers since this was announced. Everyone (me included) are ANGRY about this name change.
1. First of all, WE should have been included on this change proposal. We LIVE with this, so we should have been consulted. Instead, it was told to us. Arrogance!
2. MS is an inflammatory disease and it does go into remission. The scars may still be there, but the disease IS in remission.
3. Most of us spend most of our time in remission. If one R is going to be dropped, we prefer the other one. We would rather live with "Remitting MS" than "Relapsing MS."
4. Why change the name at all? Because fear motivates. "Relapsing MS" conjures more fear than "Remitting MS," and god help the shareholders if we lose motivation to take our $70,000/year medication that has a 30% efficacy.
So, if you say "Relapsing MS" to me or my friends with Remitting MS, we will respond with emotion, but it will not be one you like.
We live with MS, so check with us before you make these different definitions of our lives.