I'm so sorry you have gotten a rotten diagnosis, but you have answers, now, and can base your plan of attack.
I personally believe "benign MS" is a cop-out. You either have MS or not. Hopefully you can start DMDs sooner than later.
Welcome to this side of the mountain (sigh...)
I had my one and only attack four years ago and have been in limbo for the whole four years between ADEM and MS.. that is what my Neuro who is a MS specialist has just told me recently. He never said that until this point at four years down the road. He said he can't be possitive and no one can, but at five years I could start to breathe and at 10 is more concrete but his opinion about my case is this.. He does not think this is MS, and if it is it would have to be a very benign case.. I too don't know what that means even with the mountains of knowledge I have learned throughtout this four year nightmare.. I an guessing that is his way of saying he doesn't know for sure and no one can know for sure in my case.. No new lesons or attacks in four years is why.. I believe this is just their oppionion about those of us who are not so cut and dry in our case.. I chose an MS specialist to be my neuro because I figured if he seen MS patients daily he would be better able to recognize it when he seen it.. I have gotten what I was looking for and all he can really give me his opinion.. I have accepted the fact that I may never be completely sure I don't have MS and after four years of struggling and worrying about it decided to accept each day for what I have because really no one knows for sure about cases like mine.. Acceptance of the unknown is where I found my peace of mind again or at least what I've been able to salvage of it.. Four years is enough of my life to give up to this fear so I simply took back my life and try to live it for whatever it is day by day.. I do understand the frustration as I too have lived thru it as well:) Hugs to all!!
"and how can ms be benign?" You asked a very good question. It is possible that your particular MS will have a benign course. There is no way to know if it will stay "benign" for your lifetime. More than one neurologist has told me that I benign MS. Huh? I'm on disability because I cannot work due to unrelenting tremendous fatigue and occasional pain. Looking at me, one would not know I have MS, but if they resided in my body for one minute - well, they would understand quickly.
BTW - every neurologist suggests that I be on a DMD. It's too risky, they say, not to be on one.
I looked at your previous journal posts and see that you have had your fair share of symptoms. I would guess that you are not feeling "benign." I suppose there are true cases of benign MS, the type that has little consequence to quality of life. The type that has little impact on ones life. Benign? Far and few of those exist.
If I remember correctly, it is believed that persons who present with sensory problems tend to have a milder course. One thing is for certain, everyone's MS is different. Comparatively, I believe I have mild MS.
Good luck to you. Has your neurologist suggested a DMD? There has been previous discussions on this topic. Do a "search this community" right upper side with a Go button.
Maybe it's kinda like being a little bit pregnant?
Did you ever hear the explanation of the difference between major and minor surgery? One happens to you and the other happens to someone else. It's that type of thing.
My MS doc decided to use the word "stable". It's beyond me why they have to use any descriptive adjective to modify the MS noun. Is it required by diagnostic coding? Doubt it. They labeled me with (plain old) hyperlipidemia as soon as I was one point over a randomly selected normal. I think it just gives them an out if they feel they need it later.
Anyway, as long as they are willing to treat and follow I'd try not to worry about it too much. I can't complain if MS is rotting me away slower than expected.
Benign MS can only be diagnosed after the fact. You would have to be followed by neurologists for decades for such a diagnosis.
In my case I have had a very slow progressing MS over 40 years. I had Neurologic symptoms in the 1960's but they did not have the equipment back then. It did not fully show up until my 40's. I had always had symptoms so I did not notice the MS. My Neurologists do nothing in my case except monitor it. DMDs do not work for my MS.
I see we both live in BC - are you in the lowermainland area? I am also searching for answers about ms and have no diagnosis yet. I think "benign" is a Canadian Medical catch word meaning they have no idea whats going on or what will happen. About 4 years ago I was diagnosed with "benign heart arrythmia. The Cardiologist did every test he could and then came the talk. We sat in his office and he stated that they have evidence to see that my heart does skip beats, beat irregularily and there are episodes of tacycardia (racing beats) too but there does not appear to be anything "wrong" with my heart? Confusing, because I am pretty sure your heart isn't suppost to do those things regularily for no reason. So he labels it "benign" and I asked does that mean you don't think it will kill me and his answer was "there is no medical evidence suggesting it is currently harming you and we really don't know what will happen in the future". And that was it, no treatment, no follow up. I asked, so I am to go about living with this and every time it happens (which can several times daily) I am to tell myself its okay and I'm not dying and move on. He actually smiled at me and said "pretty much - there is not much else we can do". So I totally can understand your frustration with the "benign" diagnosis. When a condition impacts your quality of life IT IS NOT BENIGN! Doctors should choose their words more carefully and have more empathy for their the people they care for. Just remember we are here for you and if you want to rant about this I am happy to listen and even join in (as you can see) A
The others here are oh so right in asserting that benign MS is a crock. I don't recall your symptoms, but if they are interfering with your life or causing you pain, that's not benign. Does the doc want to see you on a ventilator before agreeing that MS is pervasive and dangerous?
Let him live one week with what you have, and I bet he'd change his tune.
I hope he's not using 'benign' as an excuse to deny you a DMD. You absolutely need it, so insist on it.
Well, I can't say congrats on your diagnosis, but somehow it feels like the right thing to say. It is odd though, I told a lady the other day that I had MS, and she gave me the BIGGEST hug, and said " welcome to the club".... it was kinda odd , but you know, it was the right thing for me . I still chuckle about it.
So, I guess I will say to you, " welcome to the crowd", and hope that it will put a smile on your face as it did mine. It is meant with love ,.
Ms is the most difficult thing that I have ever had to deal with too. Actually, my first neuro told me " benign" too. I did ask her, and she told me, it was usually referring to a person who has only had ONE attack, and no other real symptons for some time. I kinda looked oddly at her, as she was telling me this, I was shaking in my chair, I could not walk, I failed the tests that she gave me, I could not see very well either, but she said " BEGIGN" anyhow. So, figure that one out. I have since seen 6 other neuro's too, and been told anything from we're not sure, to you have secondary progressive. ( that was my last dx_)... so, we move on, and go to yet another neuro at the end of the month. I am on Gabapentin 1500mgs a day, and seroquel to sleep, and that is all that they are willing to give me. I am 51 almost 52, and they said that the other DMD's that they have are for YOUNGER people. So, again, we wait.
Been to the hospital a couple of times over the last 6 weeks, and they give you demoral or morphine for the pain, and say, " have a nice day" ... so, needless to say, I don't think the Dr;s really have a clue.
Sorry for ranting a bit, but I agreee with everyone else, your dx is a crock, and the Dr's are afraid of us.
I just found this, and this is the Dr. at UBC that I was supposed to see. thought we all might think this is VERY interesting. so, here it is...'Benign' MS patients should be warned, study says
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o Yahoo! BuzzYahoo! Buzz
Date: Tuesday Feb. 13, 2007 8:19 AM ET
TORONTO — People who have had multiple sclerosis for a decade with few disabling symptoms are often told they have a mild form of the disease and will continue to do well. But a Canadian study has found that so-called "benign MS" doesn't always remain benign.
In fact, researchers found that half of those patients said to have benign MS 10 years after initial diagnosis saw their disease actually progress over the next decade, including 20 per cent who ended up needing a cane or other assistive device to walk.
Study co-author Dr. Virginia Devonshire, head of the University of British Columbia Hospital MS Clinic, said she and her fellow researchers were somewhat surprised at the finding, which was based on analysis of a detailed database of 169 benign MS patients followed over 20 years.
"We really did think that we would be able to say that there was a group of people who had certain symptoms from the beginning who did well for a period of time, that they were always going to do well, that you could feel comfortable telling them that," Devonshire said Monday from Vancouver.
"Unfortunately, that's not the case."
"Nobody wants to find out 10 years later that they've got disability and impairment. And . . . we can't always tell somebody because they have certain symptoms at the beginning or because they've gone so long without disability that they're always going to go without disability, and therefore don't need treatment early on."
Devonshire said the study - published in Tuesday's issue of the journal Neurology - suggests that patients who are told they have benign MS still must be regularly assessed to see if subtle neurological changes that might herald later progression of the disease could be picked up early.
Multiple sclerosis is an auto-immune disease that attacks the protective covering - called myelin - of the brain and spinal cord, causing inflammation and often destroying the myelin in patches. An estimated 55,000 to 75,000 Canadians have the disease, 75 per cent of them women. Canada has one of the highest prevalence rates of MS in the world.
About 10 to 15 per cent of cases are considered benign, said Marianne Chilco, a spokeswoman for the Multiple Sclerosis Society of Canada.
Symptoms include numbness or tingling in the hands and feet, feeling off-balance, clumsiness and visual and cognitive problems. Most patients experience what's known as relapsing and remitting MS, in which they will have an attack of symptoms that will last days to weeks. "Then the patient gets better, fully or partially," Devonshire said.
Or, the patient seems to get better, at least on the surface.
"In between attacks, during remission - which is not a true remission - there are no new symptoms, but in fact if we watch an MRI in this 'remission' phase, we see new inflammation coming and going all the time," she said. (MRIs can pick up lesions on brain and spinal tissue.)
During the first 10 years, attacks come and go, the person recovers and there seems to be little residual disability, she explained. "But we think between attacks, there are little bits of damage occurring in the brain and spinal cord all the time. And after 15, 20 years, all those bits of damage add up."
"It's like the tip of the iceberg: suddenly, then, you see the disability and impairment."
Devonshire said doctors don't know whether benign MS patients would benefit from starting treatment with immune-modulating medications aimed at limiting neurological damage - drugs that many patients are loathe to begin because they are administered by injection and are expensive.
That's something only further study can determine, she said.
In an editorial accompanying the study, Dr. Sean Pittock said that if doctors had an effective, safe and inexpensive oral medication for MS patients, "few would argue against the 'treat-all' approach." However, disease-modulating agents (DMAs) are expensive and have side-effects that can cause skin reactions and flu-like symptoms, and their long-term effects are unknown, he noted.
"There are no data on the advisability of commencing DMA in MS patients who have experienced a favourable course over many years and lack clinical or radiologic (MRI) evidence of recent deterioration," writes Pittock of the department of neurology, laboratory medicine and pathology at the Mayo Clinic in Rochester, Minn.
"A 'watchful waiting' approach with regular clinical and MRI monitoring before initiating treatment may be a preferable approach for some patients."
Devonshire and the MS Society both urge patients who have been told their disease is benign to maintain regular contact with their MS centre and neurologist for ongoing evaluation of their condition.
"But I think the bigger message is for physicians," Devonshire said. "I think physicians have to be cautious about telling people they have benign MS. I think it's reasonable to say: 'You're doing well now, but we can't predict the future and we must consider all the options.' "
When my neuro confirmed my dx of RRMS, I asked, naively and hopefully, what were the chances I had 'benign' MS, having come across this in my reading prior to my first appt with him. Looking back I can't believe how naive I was, as I sat there cross-eyed with full blown double vision, unable to stand on my own before tipping over, totally exhausted, caught in the death grip of the MS hug, and generally feeling horrible and vulnerable and worse than I'd ever felt in my life. Did I really think that even if benign MS was a real thing, that this was what I had? My first real experience with denial as a coping mechanism, lol.
My doc's response was similar to what others here have said, that benign MS is an after the fact assessment, at least 10 year post dx. He said it is impossible to predict what course anyone will have; that there are risk factors that may point to a potentially more aggressive vs less aggressive course, but really there is no way to know in any one patient until much time has passed.
I have no idea why drs would make this statement, perhaps to soften the blow of the MS dx?? Or perhaps, paying attention to pt history, that they can somehow conclude that although pt is only being dx'ed now, they indicate having MS symptoms going back 10 or more years. If they are doing relatively well at time of dx, with little or no disability, perhaps they think with confidence that this person has actually had MS for years and are doing well now, so conclude they must have mild or benign MS.
Here is what I know about The So called "Benign MS"
Describes a type of relapsing-remitting multiple sclerosis in which few relapses occur. These relapses tend to produce sensory symptoms, which go away and leave very little or no residual damage or disability.
There is also debate on the topic of exactly how to define benign MS, but some researchers propose a definition of benign MS as people who have had MS for at least 10 years and who have an Expanded Disability Status Scale (EDSS) score of 2.0 or less.
Many neurologists and researchers Do Not Use The Term "benign MS," as there is so much debate and controversy over the exact definition and numbers of people that could be classified as having it.
I too was dx with benign MS 10 years ago. The Neuro said that he 'hoped' that my MS would remain sensory. Therefore I was unable to go onto DMD's, now that is the NHS for you.
Fast forward to 6 months ago, and I went to see another Neuro, who said that because I have 10 lesions, as well as the big major one on my T10 spine, he still said that it was benign, and this is from a French Neuro ( btw the French are paranoid about their health, and pay heavy into the system) so he too said that I did not need DMD's and that they would treat my sx as and when they arise!!!!
I can barely walk because of the lesion on my T10, but STILL they give a benign dx.
I give up:/ But I have another Neuro that I am seeing now so fingers crossed
hi everyone thanks for all the messages i really appreciate them i am so sorry that i have not had time to respond to all your wonderful messages/ i have been in the hospital the last few days i had to have an emergency surgery as i had a very painful bowel situation they the dr.s kept calling it a hemorrhoid but it turns ou t that i had a bowel tear i am assuming is caused by the chronic constipation that i have been having.
So sorry to hear about your surgery. Hopfully this will clear up that "benign" hemorrhiod problem. I worry about the medical system. I was in ER twice for what they said were pannic attacks and ended up having emergency gallbladder surgery. Sending watm wishes for a speddy recovery. A
Sorry to hear of your emergency surgery. Sending wishes for a speedy recovery.
As for the "benign" MS, I was told that two years ago before my official dx. One of my neuros thought I had at least benign MS and the others all sat on the fence saying all they saw was a few sensory complaints and did not want to "label me" for insurance reasons.
Next month will be the one year anniversary of my official dx. In retrospect, I've had MS symptoms for over 30 years. Just chalked each one up to something else. Now a year later, I am progressing enough for my neuro to consider changing my dx from RRMS to SPMS. So much for benign.
Even if you are considered "benign" make sure you get on a DMD. You never know when benign will turn to progressive.
Sending get well hugs and hope you are feeling better soon.!!!!!!!!!!
Hi, I never welcomed you to the diagnosed clan, for what that's worth. And I am breathing fire that neurologists persist in trying to tell people whose lives have been turned upside down that they have benign disease.
Everybody has already said all of it, but you guys know that I always have to say stuff again.
In my educated opinion, there is no such thing as "Benign MS" until the end of life when you can look back and say, "Well, the MS never affected her very much." I have repeatedly reported other studies (than the Canadian one reprinted by Candy, thank you!) that show that if you look at a large group of people who told they had Benign MS, after 20 years, almost 30% need assistance to walk and amost 30% have noticeable decline in cognitive function.
Now, people, I need a cane to walk and often need a walker. This is NOT benign. By this point walking has become either dangerous or a hardship! And, noticeable decline in mental function is not benign either! We all miss our brains when they take leave of us! Yet, people are still being told that their disease is benign. The reason is often that THEIR MRI's LOOK BENIGN!!!! Why can't the neurologists who evaluate us realize that assessment of severity (RRMS vs PPMS, RRMS vs SPMS and relapses) are ALL made looking at the effect and symptoms of the patient NOT the MRI images.
Staging of a person's MS is not, and NEVER has been, an MRI decision. I find the ignoring of a person's functional status and quality of life to be a horrible dismissal of the fact that these doctors are treating real, suffering people.
Yes, a person may be having a mild or benign course currently. Any neuro that thinks he can truly predict the next year is totally full of himself - and likely to be wrong. All the studies show that the DMDs are most effective when used earlier. A DMD given for two years at the beginning of the disease will have a far greater benefit to the patient than the same DMD given for 2 years farther down the road. When someone says, "Your doing fine now, we will wait to treat", they are withholding the best chance we currently have to ENSURE that a person's course will be milder. Oh, yes! Let's wait until you have a whole lot of damage going on!
Running the odds that someone will stay benign is like saying "Well, you "probably won't get HIV from this exposure - so lets wait until your immune sytem has taken a nose-dive before we treat." what??? "Probably" just doesn't cut it.
Mary - We are here for you whatever your needs are and whatever your emotions are. That's why we exist.
Hi , So sorry Mary about the surgery. I do really hope for a speedy recovery for you, and NO more pain. I too have been in the emergency a few more times, with similar situation as you. They still haven't dx;s my problem yet, one minute its gallbladder, then its muscle spasm, then it is for sure MS, because they don't know what it is, now they say maybe bowel too, so we wait, and take morphine.
I'm glad that Quix saw and read the report that I put up. I was supposed to see that Dr. at UBC, but our Clinic here won't allow it, and say that if I go to Vancouver, I can't continue at the clinic here in Victoria.... so, needless to say, we stay here.
thank you all for your wonderful posts everyone is so supportive you all brought up really good facts. and i agree with you all 100 percent i think alot of the ms neuros have a great big chip on there shoulders and like to play god. i can notice that i am having cognitive changes i am curious what my appt. with the neuro opth. will bring i am sorry i still cant sit i will chat with each and everyone of you when i heal thanks again for all the supportive messages.Mar
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