diagnosed with mild ms

[marymoto]

hi i got diagnosed wih mild m.s guess it is better than my previous diagnosis of benign m,.s.

[marymoto]

hi thanks for all your great comments i see my gp on oct 8th so will see what he suggests to do next

[candy158]

Hi you, I guess i glad that they al least have you seeing your neuro.  

i am in the same prediciment as you.  I also agree that there is no such thing as mild or one time MS.  If we all go back in our history, to the I DON'T KNOW sicknesses we have had, it explains alot of what we have been going throuh, and just how long we might have had thie damn disease.  

I know for me, it goes back to when i was 29.... and had the COLD WATER running in my veins symptons.... as well as many other.  They did not have MRI's way back then, so they just said, Thyroid problems, (opps that is wrong), Pitituary problems \( opps that is wrong) , when my back froze for 6 months, and I could some days not even walk...... see a chiropractor and it will get better, ( actually it took almost 2 years with him, and I stilll see him regulary) , so that was a good thing ............... but when all these things add up to no diagnosis, and questions, it all rings true that maybe you have had this a long time ago, and for some reason it is acting  now,.

That is my thought anyhow, hope it helps,
keep smiling, and know you are loved,

candy

[HVAC]

Early stages is when the DMDs work the best. If it were me I would want a more aggressive MS Specialist.

Alex

[lovemy6monkeys]

I have "Early MS", meaning that my symptoms have not been around for very long and there is not a lot of disability or impact on my daily life yet. But, I still have MS and I was offered DMD to try to keep more disability from developing.

IMO, MS is MS and if you are diagnosed with it, even "early/ mild/ benign" you should be offered DMD so you can have a fighting chance of keeping your MS "early/ mild/ benign"

~Jess

[Sparkysarah]

Hmmmhhh does not sound that mild to me if you are having ongoing symptoms. I think "mild" MS is an inappropriate dx and I am not too taken with "benign" MS either. I  am  still a novice in this game of understanding MS and think it takes a lifetime of experiencing it to really get to grips with it. However I think you either have MS or you don't and just because someone is not in relapse does not mean it has disappeared.

Yesterday I went to the funeral of my godfather and met lots of relations who I had not seen probably since the last family funeral. Nearly everyone told me that I looked really well and I felt overwhelmed with the lack of understanding of this condition. An aunt has a daughter-in-law who I understood was dx'18 months ago and has had what appears to be a clinically isolated event of optic neuritis and she collapsed. She was on steroids and has been fine every since. My aunt's comment wound me up and she said "oh she's fine now and all better and it's gone". I hope for her that she has no further relapses...but it just hit home how difficult it is to explain to other people what it is like day to day.

So my reason for sharing this story is just to say that I disagree with your dx and even if you are in the early stages, I too have had 4 or 5 relapses but I know I have RRMS. I think in fairness to neuros that it is impossible for them to predict prognosis or how quickly things will progress unless there has been ongoing constant deterioration as in primary progressive ms.

If you are not on a DMD I would suggest that you discuss treatment asap...it is not about waiting for progression to happen but about slowing it down to give best quality of life with fewer relapses. So I agree that mild MS is marginally better than benign ms..but why not rrms?

Love Sarah.

[marymoto]

hi rena thanks for the support yes he did say he may be wrong about the diagnosis so he said time will tell. he still thinks i am in the early stages or maybe its just that i have only had about 4 to 5 relapses i dunno. i do feel i am suffering to some degree every day with my issues numbness in legs  tingling burning sensation optic neuritis and my eyes show cerebellar signs.

[Rena705]

I have to agree that there is no such thing as "Benign MS" or "Mild MS".  I had to play this game for months and months and searched and searched and cried and struggled until with the help of my friends here on Medhelp I found a neuro that was NOT LAZY and NEVER TOOK THE EASY WAY OUT.  

I have since been diagnosed with SPMS and I haven't heard the word "benign" until now.  It is interesting that in all the articles that are available for the "public" to read, there is NEVER any mention of "benign MS".  RRMS, PPMS, SPMS...never benign MS...so how come Neurologists are diagnosing people with it when apparently it doesn't exist???  Isn't that the question of the year?
  
How many neuro's have you seen my dear?  The phrase "Benign MS" has been bantered around here a lot as I am sure you have seen in that past.  I don't know if you are satisfied with your diagnosis or not but if it were me I would continue to seek out another opinion.  You need to ensure you are on the right meds and getting the proper care for your disease...this is the place to be because if it got me through it I know the members here will get you through it.  I hope you get the answer that you need to satisfy you and if benign MS is it fine.  I only hope that you are not getting a raw deal only to get a nasty surprise later.

Lots of hugs
Rena

[johnniebear]

I got the same DX in April of this year, it's sort of a wait & see for DMD'S  or more Sx pop up,  I was scheduled  for another MRI  in July for my first MRI on 3T,  the Dr  bumped it closer to my next appointment with him,   the next MRI will be done at the end of OCT,  I do have more SX'S that are minor.

I have a great   MS Neuro ,  and went thru four  Dr's  prior to this great Neur- Dr,

The disease starts or flares up and some point, I had the MRI done because my left eye was flooded with blood from a headache, they sometimes call that RIS, however I have an abnormal VEP also- three brain lesions and one lesion on the C-spine-  and one O Band.

Reading the charts according to  the McDonald criteria  no clear DX yet

Hope this helps.  t
John

[Deb61]

I agree that there's no such thing as benign or mild MS.  MS is so unpredictable.  There's no way to predict with certainty the outcome of your disease process.  

[HVAC]

Some people's MS progresses more slowly. The important thing is are they treating the progression? Refresh my memory are you on a DMD?

Alex

[jensequitur]

Well, I have to throw in my two cents and say that benign MS is a *lazy* diagnosis.  It claims to know the course of the disease before it's taken its course, which is optimistic at best and irresponsible at worst.

So mild MS is certainly 'better.'  

[Erin0313]

  I have never heard of mild MS. Is that new, lol? I think it must mean that you have mild symptoms or mild damage / debilitation.

I do know that benign ms is a legit dx. Did your doctor tell you that was his dx or did he write it somewhere?

Hugs,
Erin :)