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911669 tn?1294099188

My neuro said, "Benign MS" today.....YEAH!

My neuro appt was today and my negative EMG/NCS must have made the difference.

I asked my neuro straight up what he thought was wrong with me...  At first he said, I don't know yet, but it is not stress or fibromyalgia etc.  

He looked at me, over his glasses and said, "sometimes it can take a few years to be diagnosed with MS."  He said,
I think it is Benign MS..... We will continue to treat all your symptoms with medication and continuous followup."  He said, we are both on the same page and that is what is important....

I was elated for the first time ever after 7 years.  Happy today......

terri
Best Answer
1045086 tn?1332126422
Hi Terri,

I'm very glad to hear of this progress with your neuro.  I think he was the speaker at one of the MS seminars I went to.  He mentioned "benign MS' there.  His presentation was good in general but his use of that term put me off a bit.  It always sounds to me like the description of minor surgery as one that happens to someone else!

I've heard you describe several life altering symptoms in the time I've been a member of this forum.  What's so benign about that!?!

Anyway, I don't want to deflate your progress balloon.  This is a big step after a long patient vigil on your part.  You can step into a new phase of dealing with an actual diagnosis at this point.  

I can understand your desire to stay with a physician you know when he is willing and able to treat your symptoms.  Maybe you both will be ready to revisit the DMD issue at your next appointment.  I wasn't initially sure I was interested in taking a DMD and I'm still not convinced it will help with my disease.  BUT, I did come to the realization that waiting until more disability set in was counter to the very purpose of this therapy.

Congratulations on this milestone.
We are going to have to meet up one of these days and actually talk.
Mary
14 Responses
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911669 tn?1294099188
Thanks for your comment.

My neuro is not definitely fixed on saying it is just Benign MS.  I think he is waiting and maybe change it to secondary progressive when deemed appropriate.

He also told me I have a lot going on, many things, but he is still not quite sure yet definitively, so will wait awhile longer and see.

I am on the same page with him at this point.  From what I have found he is one of the most highly recommended MS neurology specialists in our county.  I have had second and third opinions in the past from Cleveland Clinic and another local MS clinic, then with no findings.

I appreciate your response, Rena....

terri
Helpful - 0
335728 tn?1331414412
I think a few people here know my position on Benign MS...it doesn't exist.  My bone-head neuro tried to tell me that I had "Benign" MS for a few years and after a lot of struggle and tears and symptoms with no relief, I finally found a Neuro that has diagnosed me with Secondary Progressive MS.  I was diagnosed in 93 but other than having to keep my seizures under control my disease was DORMANT until 2006 when I presented with Trigeminal Neuralgia which was also misdiagnosed as Paratrigeminal Neuralgia which with treatment should disappear after a few months...mine didn't.

I am really glad that you are comfortable with your neuro and want to believe what he said but in all honesty, a second opinion is a must.  There are so many more neuro's that don't believe there is a "benign" MS than do so this is something you should consider.  I wish you luck with whatever you decide Terry.

Lots of Hugs,
Rena
Helpful - 0
911669 tn?1294099188
Thanks to all of you for your comments....Greatly appreciated!

Now that my neuro and I are on the same page, maybe in January I will broach the topic of DMDs and see what he says.

Yes, I do want to slow down this disease and I have felt that I was already secondary progressive MS at this point, but yesterday I had to reiterate to myself that he actually said the word "MS."  Still cannot believe it.

terri
Helpful - 0
560501 tn?1383612740

  Hey there,

   While I think everyone has touched on every point, I will not bore you w/ redundancy (is that a word?)   I just wanted to say to you that I am glad that you have some Validation from the Medical Field!  it does put things in to a different light when a doctor actually gives a name after all these years.

    I am sure that whatever decisoin you make, It will be the Very Best one for You!
Take Care,
~Tonya
Helpful - 0
649926 tn?1297657780
Terri,

  Congratulations!!

  I had never heard of Benign MS until a few months ago. One of my biggest pet peeves is that everyone knows someone with MS and in their mind that is what MS is, right? Well my family has a friend who has MS and he is doing fantastic. I got so tired of hearing that Chuck is doing great maybe if you find out what he is doing you could be like Chuck!

  I called chuck and asked him if he would talk to me and the only thing that he said was that he goes to the Cleveland Clinic and has Benign MS. I didn't feel comfortable like he was happy about sharing so I looked it up and even went to Cleveland for another opinion for myself.

This is the definition of Benign MS - A type of relapsing & remitting MS is which 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. It is thought that 10-20% of people with MS have Benign MS, but it is impossible to predict who will follow this course. It is also estimated that half (or more) of these people will eventually have MS progression and no longer have Benign MS.

There is also a 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 an Expanded Disability Status Scale (EDSS) score of 2.0 or less.

There is a study from Dr. Rodriguez at the Mayo Clinic and he says there should be an entire group for Benign MS and that you can tell after only 5 years if the patient has Benign MS. He claims that all of the hoopla of starting everyone on DMD's as fast as possible might not be the best idea for people who truly are in that category.

Well the family friend Chuck is fine 20 years later and I hope that you are too! Only you can make the decision for yourself so take some time, enjoy feeling good for a change and then do what makes you feel right.

Hugs,
Erin :)
  
Helpful - 0
1253197 tn?1331209110
Hi Terri

I am a great believer in listening to you own instinct and what feels right so if you are Ok and happy with what your neuro has said and feel that you can now just get on with your life, then go for it.

I also understand where others are coming from and I think there is a protective side in all of us in feeling that we all deserve the best medication that can help us and prevent further relapses. What none of us know is how our own individual journey will progress, and when things may take a turn for the worse.  

Anyhow I am glad that you feel happy and it feels like you have given yoruself permission just to get on and enjoy yourself and may be able to go forward now.

With love and hugs

Sarah x

Helpful - 0
911669 tn?1294099188
Yes, I understand what you are saying, Meg.  

I have gotten this far with my neuro, as this was the very first time he actually admitted MS to me.  This is a big step on his part.  I think he is on the line at this point as to whether this is benign MS or whether I already have secondary progressive.

I feel it would not be in my best interest at this point to go to another neuro.  If something significant happens, I am sure then he will get me started on a disease-modifying drug at that point.

Thanks......

terri
Helpful - 0
620048 tn?1358018235
Hi there, i would certainly find another DR..an MS specialist if you can.  If he would start you on a DMD, you would at least be slowing down the progression..

I have no idea what benign MS is..you either have it or you don't, its best to get a early dx so you can start taking care of yourself.  It takes a long time if someone isn't trying to find out what is wrong with you.  

I am under the opinion that if you are seeing a neuro than it is something and they can find out..

Waiting a few years is not what I would want to do.  I am sorry to ruin your elation but that is not an answer as far as I am concerned.

But it is really up to you...

hugs, meg

Helpful - 0
911669 tn?1294099188
I do not think he is willing just yet to start me on a DMD.  He up'd my Cymbalta to 60 mg and is starting me on Tramadol instead of the Vicodin, at my request.  He did not give me a new script for Flexeril, but if I need it, I know he will give it to me.  I still have some left.

I guess he is waiting to see if I will have another relapse.  He did examine me again today.  I go back in January for followup.

terri
Helpful - 0
634733 tn?1316625992
Alex is right by initial dx was benign / mild but this isn't mild and everything is comparative anyway!

I live in the UK and you have to fit certain criteria to get a DMD and my sx just don't fit
Helpful - 0
667078 tn?1316000935
Benign MS is okay as long as he is willing to strart a DMD right away . If he is waiting for Progression you need a new Doctor. Benign MS is usually diagnosed on a necopsy of someone who had no MS symptoms but the tissue shows MS. There is slow progressing MS but no Dr. can tell you when that will change. They do not know.

I have had a 40 something year slow progressing MS but know one knows when that may speed up.

Alex
Helpful - 0
911669 tn?1294099188
Pat, thank you so much......  Some would not understand, except for all of us, about my being elated....but it is such a relief after all these past 7 years, knowing that I was not crazy after all.....  It is such a hard road....but now knowing for sure, I can "get on with my life."

Thanks for the hugs.....
Helpful - 0
634733 tn?1316625992
I don't think we have met but - I really do know how you feel at least someone is on your side and listening.

I had a 20 year history of sx and it took 6 years from a possible benign MS to a definite RRMS dx only last year.

Sending (((hugs))) and whooping for you.

Pat x
Helpful - 0
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