What is benign MS, and how do you know if you have it?
I have been seeing things about benign MS. How would the neuro know if that is what type of MS that a person has? Is there a more common age of onset for it? Would someone with only one attack be considered for this? I have tried to google it but I am still a bit confused about what it actually is!
I asked my neuro about this and he said there is really no way to predict a benign course. One can only look back after several years to describe a particular course as having been benign. Benign would be a relatively quiet disease course, with few mild relapses, and minimal disability. His opinion is that it is generally improper to advise a newly diagnosed patient that their MS is benign --- there is simply no way to know what the future will bring for any of us. According to the literature, those who turn out to have benign MS are a small percentage of all those with a iagnosis.
Having said that, I suppose if someone was diagnosed after years and years of mild symptoms that eventually turn out to indeed be MS, one might be able to say it is benign at the time of diagnosis, based on looking back at a pattern of long term symptoms that were evident prior to the point of being diagnosed. Just my opinion.
DB - you stole my line! Yes, Benign MS can only be named after it has been benign. In the beginning when it is benign for the first five years, it is "likely" that it will remain benign, but there is no guarantee of it. There are plenty of cases where it gets fierce later on.
That is one of the problems I have with the Mayo's advocating that 'benign" cases not be treated with the DMDs. Why not treat and if the course remains really benign the treatment can be stopped. But, if you hold off and you're wrong, those early years, when the treatment would have been most effective, can never be regained.
Much of the Mayo group's reasoning is based on cost effectiveness, the likelihood that someone without significant symptoms will not be compliant, the possibility that the med if used, won't be needed, the cost to insurers if a med is used that is not really needed. They do not deal with the impact of those for whom their assumptions were wrong.
Both my neuro and my neur-opthamologist told me that those who present with mainly sensory symptoms (vision, tingling, etc...) TEND to have a MORE benign course. They did not say that that was a guarantee, but that is what they typically see in their practices.
My female cousin has Benign MS. The only symptom she has is fatigue with one lesion in her brain and one lesion in her spine. Her course has never changed and she is now 65 years old. She has never received treatment with the DMD's.
Does this mean that your course would be the same? No. Follow-up visit with a check of your current symptoms are in order. Benign MS is actually very rare among people diagnosed with MS.
If you have any new symptoms or symptoms that persist, why shouldn't you be on a DMD? This is something you need to keep an eye on. I am with Quix, the DMD's seem to be so much more effective in slowing down or even halting the disease when the disease is treated very early. Cost should never be a considered in anyone's care.
I haven't been told I have benign MS. The first neuro I saw when the attack first happened dx MS with only a brain MRI that showed multiple white matter lesions and a possitive VEP. He didn't take any blood work or rule out any mimics. He sent me out of the office with a bag full of Rebiff.
I went for a second oppinion because I wasn't comfortable with being dx with MS without any other test and without ruling anything else out first.The second neuro and still my doctor today two years later done blood work, spinal tap, polyomerce chain reaction test of CSF, and has done repeat MRI of the brain every six months over the whole two years.
So far they have all showed no change to the 10 white matter lesions, no enhancement and no new lesions. I have had no new attacks, only residual symptoms from the origional attack that seem to be slowly vanishing.
At presentation I presented with vision dysfunction, confusion, deppression, anxiety,depression on consiousness, cognitive problems, disorientation, right-left confusion, trouble consentrating, shooting leg pain, back pain, stiff neck, anorexia, rapid wieght loss, headache, virtigo, pain and pressure in the back of my eyes and head, numbness in my eyes, forehead and scalp, twitching in face and especially around eyes.
All of these symptoms have slowly slowly tried to resolve, and I am seeing less and less of them and some of them are completely gone. The only new symptoms that I have had since the attack two years ago, is some transient numbness and tingleing in the backs of my calves and the sides of my forearms. My neuro says this is residual damage from the lesions.
He says that he thinks I had ADEM, but have to be watched for MS, but did not say for how long. I asked him if I had MS wouldn't something have showed up on MRI in two years. He said , he would have expected to have seen something by now, but he can not rule out MS yet!
Does these presenting symptoms seem like they are all sensory? My LP was negative, and showed no O banding! My neuro does not want to start me on DMD's now unless he sees more evidence to support an MS dx. Is he doing the right thing?
Hi, sorry to be so tardy. I have been sleeping the clock around the last couple days.
Kiddo, you've asked this question so many times, I know it is just horrid for you to be between diagnoses. What if it IS MS and you aren't being treated, and all that. I just know that I cannot answer your deepest question. I just don't know enough.
I have been doing more reading on ADEM since you came on board and I can't give you my +/- educated opinion.
The onset of your disease was far more characteristic of ADEM than of MS. The sudden cognitive signs of disorientation, confusion, mentation problems, combined with the stiff neck - and all the things put together just sound a lot more like ADEM. I don't understand the mechanisms of ADEM becoming MS. I don't know if it is being mistaken in the first place, but I more get the idea that there are similar immune-inflammatory things going on and sometimes ADEM does progress to MS.
It sounds like you are in excellent hands with your current neurologist. From everything you've told us, I don't see any glaring oversights. I think you really are stuck for now. God willing, this IS just ADEM and it's a process of healing as much as you can.
If I remember right ADEM does not show O-Bands in the LP.
Yes, the symptoms you describe are all sensory except the facial twitches when the whole thing started. Facial twitching is common in viral infections, stress situations and any condition which might affect the elctrolytes (as in the rapid weight loss you had). The face (especially around the eyes), thumb and calves are the most common places for benign twitching in normal people - not to imply that you are normal, of course.
Again, as I have said before, the two years without changing of your lesions apparently makes MS less likely, I don't know. My brain lesions have not changed now in three years, though the last year I have been on Avonex. But, that is two years prior to that in which there was no change on 3T imaging.
I wish so hard that I knew more, had a crystal ball, and could tell you something definitive. But, I do believe you are in the hands of a doctor who is really looking out for you.
Thanks for taking the time to read my questions again! I trust your opinion and appresiate the honest answer you gave. It confirms what I already felt in my gutt! My neuro does seem to care, and is probally telling me the truth in the fact that he is not totally sure, but seems to have the opinion for now that this was ADEM. But his concern to have been watching me closly for two years now shows me that he is trying everything medically possible to get to the correct dx! This is why I have remained his patient through this all! It may end up being MS, but as I stated before, he has told me of this possibilty and told me that time is what will tell in my situation. Again, thanks for easing my mind that I seem to be in good hands with this neuro! So for now I will just kick back and ride in this limbo boat with all of the rest of the limbolanders! AT least I am not paddling this boat alone!
It is good to know that you are there and you care. You have been a good friend to me and your encouragement means alot! I am here for you too if you ever need me. It is a good feeling to know I am not alone in this! I have met a lot of good friends here, and wanted you to know that I am glad to have you as my friend!
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