Benign MS

[gorlie]

Hello everyone,

After being diagnosed MS  I saw a new neurologist at the MS clinic for the first time last month , he told me that my MS is benign!!  Was put on Rebif.   Is there any one out there with it??..What I can read most of you have the other kinds..What should I be expecting as getting worst..?  Or is it gonna become progressive ms.?  

I do have tingling ( sometime like a burning) in my hands off and on..little twitching in my leg muscle and heavinest, fatigue.  But never anything like a lot of you guys that I read.. I have low back pain that doesn't seem to go away..don't know if related..I have a high tolerance for pain so I get to push it aside even if it's sore..  My headache of 2 yrs is now manageable with nortriptyline daily.  

Merci
Nora

[Eyesnlegs]

I just had to comment on how lucky you are to be having the help that you need.

I have been having problems which have been mis-dx for 19 years, then 5 years ago it was 'probable MS' then last year it was mild MS but still no treatment whilst bit at a time I fall apart. Not as bad as many around here but enough to make life very difficult.

Hope it all works out ok.

Pat
x

[Mand125]

Hi there

I think we are all wary when hear the "Benign" dx. As others have said though at least you have been put on a DMD so we will forgive him.

I am on betaseron, have been since August and I really think it has altered the progress of my MS. I have had no new relapses since starting it.

I'm like HVAC in that I think damage was done in the time I was not on the drug and wish I had been on it years before.

Take care
Mand

[gorlie]

How are you guys doing on the DMD?  Did you find a difference?  When do you know that the DMD given is not for you?

Tks

[HVAC]

Nora

I am so glad you are on the Disease Modifying Drug. My Neuros waited two years to start me on DMDs  because my symptoms were not dramatic enough. I think damage was done in that two years. It is hard because no one has a crystal ball. I read a book my MS nurse gave me by a leading  MS researcher and he said Benign MS is an after the fact diagnosis. Like you go your whole life with MS and it never manifests. No one can predict how this disease will go.

Alex

[fdmh]

What is Benign MS.  Does that mean it is so early that it is not causing a lot of muscle sx?  That it will never progress?  I have noticed and been keeping track of my eye twitching (left lower lid always, same as where my light flickering was which is now gone) and since April it occurs at least 15-20 times/day, every day.  Doesn't seem to be anything more than an annoyance so I don't feel I need to call to have it looked at any sooner.  Would people agree with that? I have been more fatigued, having to nap for 2 hours in afternoons on Sundays.  Maybe just because I've been outside more.  If I don't get 9-10 hours of sleep everynight, especially 2 nights in a row I think it just catches up with me very quickly.  I did have my thyroid checked which was normal again (yeah, right dose).  

[essdipity]

I too am very glad you're now on Rebif. That's the most important thing.

But beware of doctors bearing benign MS! If I were you I'd start looking around now for a new neuro. If he makes one incorrect or illogical judgment, he's likely to make another. He also is less likely to treat your symptoms aggressively.

ess

[Lulu54]

Nora,
As I read your opening about benign MS I was holding my breath preparing to be angry, and then saw your MS neuro rx'd  Rebif.  That is great news! No need for me to be upset with your neuro.  

You probably have relapsing/remitting MS, in a very mild way right now.  The Rebif will hopefully help to keep it that way.  

be well and stay in touch,
Lulu