As you may know there are quite a few types of multiple sclerosis. Though if our previous polling is to be believed (and it concers with previous research I’ve conducted) around 60% of people with multiple sclerosis have been told they have relapsing remitting multiple sclerosis. Though a surprisingly high number do not know do not know into which group they fall. Around 7% in fact!

So why am I writing this blog?

Well one of the features of multiple sclerosis (which a number of our readers have mentioned here or on on MultipleSclerosisTalk) is that the type that a PwMS is diagnosed with can change overtime. Normally is is from relapsing remitting multiple sclerosis to another type , such as, progressive relapsing multiple sclerosis.

The aim of this blog is firstly to find out how common this occurrence is amongst our readers. So firstly we would ask you to take the poll below.

Secondly we were wondering if you could use the comments box below to share a few answers to the following questions:-

1) With which type of multiple sclerosis we you originally diagnosed? Which type did it change to?
2) How did you find out? Had you noticed any changed in your multiple sclerosis prior to this?
3) How has your MS treatment journey changed since the new diagnosis?
4) How did the change impact upon the life in general?

Please feel free to use the comments section below to share your answers or, indeed, add any part of your multiple sclerosis story you think will be of interest to our readers.

Many thanks in advance.

 

LisaJordan1	Diagnosed with RRMS in 1998. I have been very lucky and feel blessed that my relapses have not been more frequent and/or with residual symptoms. I have been on Betaseron since my diagnosis and steriods for my flare ups. I have been able to maintain my full time RN job thus far, don’t get me wrong there are days it is rough to do because of the fatigue or my leg is numb, but I want to continue working for as long as I can. I love my job. Realistically I know there will come a day that I will no longer be able to do my job any longer. MS will have progressed.
Maygrelle	Diagnosed with RRMS in 1989.  Been in a wheelchair 3 times and told it was not likely I would walk again and each time I proved doctors wrong.  Received a “final” diagnosis of SPMS in 2011 which I believe is accurate.  I now walk with a walker or forearm crutches, no improvement since 2010.  Very discouraged. I’ve been on Avonex, Rebif, Copaxone, and Tecfidera.  Had two relapses this year (2015) since switching to Tecfidera.  I have since stopped taking Tecfidera and hope to start Tysabri soon.  Also considering high-dose Biotin.  I currently require a PCA 6 days a week for personal care, cooking, cleaning, and laundry.  I’ve had to drastically alter my life and hobbies.  I’m not happy.
Tojo1969	Originally diagnosed with RRMS in 1991, Diagnosed with SPMS in 2012. I am now confined to a wheelchair. Not much changed really; It certainly hasn’t slowed me down
StaciR	1. RRMS -> SPMS 2. My legs were getting progressively weaker. No. 3. I was on Copaxone for a while, but I’m not on anything now. I’m in the midst of switching doctors, though, so we’ll see. 4. I accept help more readily. I don’t go out as much because it’s a hassle. I’ve asked for I’m looking for a house without steps. My MS is more visible to others, so I’ve had to answer more questions.
GrahamDaniells	Initially RRMS about 22 years ago, changed to SPMS 10 years ago. I was on DMD, Avonex then Copaxone with occasional oral or intravenous steroids. Since the SPMS my mobility has steadily declined and I now have to use a wheelchair for any hope of getting around outside. I have not worked since 2002 but not through choice.