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**toot2818** · 07-30-2015, 10:28 AM

Sounds very confusing. How do you feel? When first DX have things changed? Have you been on any "treatment"?

**ru4cats** · 07-30-2015, 11:40 AM

ScubaKris

Can I recommend you watch the Webinar "Maximizing brain health" on YouTube? You'll also need the PDF of the ppt. slides that will help as you listen. It can be found at https://www.mscenter.org/images/stor...oy_DMT-ppt.pdf

This seems to be how the understanding of MS is evolving through time, and will answer the questions you have. I know I've listened to it twice, and it really makes sense to me, rather than the old RRMS, SPMS, PPMS.

**KitOP** · 07-30-2015, 12:18 PM

Hi, There seems to be change in the air as far as MS Classifications go.

When we attended the CMSC Conference in Indianapolis this year, there was discussion about this as well. Here is the link to the video that was posted on this very subject:
http://msworld.org/conference-center...iple-sclerosis

I'm one of those people that really don't care for a title for the MS, I have MS. It's not going away.

I know that some Drs will state that you have RRMS to get the DMDs for insurance purposes. On paper in your file it says SPMS. Fact is, it's MS plain and simple.

But that is my opinion, others will probably disagree, but again, it seems that the train of thought within the medical community is changing as well.

**Scuba Kris** · 08-01-2015, 05:54 PM

Well after reading up on prms I can see how I fit in to that category. I have had a steady decline of sensation and weakness of the right side of my body. Cognitive function is declining, annoying so.

I had a job a friend got me were I was working from home. I was a SAP ABAP developer, computer programming for specific business environment. I was making decent money being an independent consultant. Then the cog fog started making my production unacceptable. Now the company I was working for was unaware because my friend was picking up the slack. I couldn't continue to put that burden on him so when they started outsourcing to India I just let my contract not be renewed.

While I was unemployed I started Rebif, this is after a long time of no treatment. And after 6 months I apparently had an allergic reaction to it. All my joints swelled first, then I had a problem going to the bathroom (this caused a UTI), then my face swelled. My fiance was concerned, but because I am stubborn I told her that I would sleep it off. Very bad idea, the next day my ears and throat swelled. By the evening I could no longer swallow anything and it was becoming difficult to breathe.

Needless to say I went to the ER, and after everything was back under control I waited a while to get on another DMD.

There's more to the recovery, the quack of an allergist couldn't replicate the reaction so the guess is that I am allergic to Rebif and sulfa based antibiotics, also I am allergic to the sun. Funny how I can be allergic to the sun, and also Vitamin D deficient.

My GP had me do a stress test for my heart which he thought was normal for me but was going to get a cardiologist to review it. On my way to an appointment with my GP I get a call from the heart center telling me that I need to immediately get to their office. When I said I was on my way to my GP appointment they said no, we are canceling the appointment for you and get to the hospital ASAP.

They were worried that my BP was 169/115. I called them a few names and asked what her BP would be if she went through what I just did. They eventually apologized for the scare, and told me that it appeared that half my heart wasn't working right. Scheduled the angiograph, did it and I got another oops guess we were wrong here's the bill.

I eventually went back to iron work. Luckily I have a talent for putting up simple saver (it's a vinyl product that serves as fall protection and looks nice when done properly for a ceiling) this means that I usually walked the rafters after the purlins were installed. These provided something to fall on to when I needed to.

I had other issues that I tried to accommodate for. Then once some personal issues happened I could no longer hide all my problems. Sooooo, after my fiance and family found out about this I stopped working.

To answer your question Toot I have steadily declined and our auto accident triggered a pseudo flare. The next few months will determine if I have a new normal or the same normal.

And with the new classifications I find it easier to use the old way to explain my condition. I think I will let the doctors use whatever and I will stick with what works for me.

Sorry about the long post, it made me tired so I will chat with you all later. Thanks for the posts and directions to finding more information.

Cheers,
Scuba Kris

**Kimba22** · 08-02-2015, 03:24 PM

Hi Scuba Kris,

Good to see you back, but sorry to hear about your MS. Only three neuros in the past 10 years? Not so bad, if you were to ask me. But, I digress. Your allergic reaction to Rebif sounds darn scary! I've heard of the sun allergy thing before, too. Also received one of those calls from my cardiologist, but turned out something (very different) really was wrong. Glad to hear that part turned out OK. I hope you recover from your pseudo flare.

Some additional information to elaborate on KitOp's post that may make it easier to understand why there's a change in thinking about the PRMS classification. (But at the end of the day, you still have the same thing) Primary Relapsing MS is now being considered a subset of Primary Progressive MS. Proposed changes place PRMS under the "active form" of PPMS. The words "active" or "not active" would also be used to describe RRMS or SPMS. In addition, "progressing" or "not progressing" would be used describe accumulation of disability. So that would mean you have Active PPMS that is progressing.

"Accurate clinical course descriptions (phenotypes) of multiple sclerosis (MS) are important for communication, prognostication, design and recruitment of clinical trials, and treatment decision-making. Standardized descriptions published in 1996 based on a survey of international MS experts provided purely clinical phenotypes based on data and consensus at that time, but imaging and biological correlates were lacking. Increased understanding of MS and its pathology, coupled with general concern that the original descriptors may not adequately reflect more recently identified clinical aspects of the disease, prompted a re-examination of MS disease phenotypes by the International Advisory Committee on Clinical Trials of MS. While imaging and biological markers that might provide objective criteria for separating clinical phenotypes are lacking, we propose refined descriptors that include consideration of disease activity (based on clinical relapse rate and imaging findings) and disease progression. Strategies for future research to better define phenotypes are also outlined." http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4117366/

http://www.healthline.com/health-new...defined-061714

http://www.msdiscovery.org/news/new_...sease-activity

Take good care and best of luck.

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