SPMS.....TO BE OR NOT TO BE?

[Waydwnsouth1]

I was dx in 2011 after a 10 year stint of moving from one Neuro to the other, including a Specialist trying to find out what was wrong with me. Since my dx I have been on 4 different DMD's including Gilenya which I just started. Nothing has worked for slowing down my progression.

My last MRI, July 2014, showed numerous new lesions in my frontal lobes. My Neuro agrees with my opinion that I seem to be progressing at a rapid rate.

So my question is, due to the fact it took 10 years to be dx could my MS progressed to the point where when I was dx I was already SPMS? That being the case none of the DMD's used to treat RRMS is working to slow the progression. I don't ever seem to be getting any better. If anything my sx's seem to just get worse.

Just something I have been wondering. Any thoughts or opinions would much appreciated.

[palmtree]

I certainly don't know the answer either. It sure makes sense, though. It's frustrating when neuros drag their heels and don't give a diagnosis when they could be preventing so much. So much wasted time.

I slipped into SPMS right after my dx so my neuro said she thought I had been living with it for awhile. I should have gone to a neuro sooner. I was ignorant about the treatments available and too terrified to even consider that I might have MS.

I hope you can find something that will stop the train.

[JerryD]

Hi, I get what you're saying and I got nothing to add that will help you. I was dx'd with PPMS in 2009 and I have been going downhill since then. This disease is miserable and you will be hard pressed to find an MSer who is living comfortably with it. Keep hoping for the 'best', That's all that we can do. Good luck

[SNOOPY]

Hi Waydwnsouth1,

It is not uncommon for a person to have this disease much longer than the actual diagnosis date.

It is always possible that you have already transitioned to Secondary Progressive(SP). Have you asked your Neurologist this question?

It appears to be difficult to determine when someone transitions. I had questioned my RR status about 3 years before my Neurologist finally decided that, yes, I more than likely am SP. But, he still teeters on the ledge between the two (in my case).

There are no hard and fast rules when it comes to MS. I have read of those who transitioned early on after diagnosis and those who stayed RR for many years. This was with and without the DMDs.

My last MRI, July 2014, showed numerous new lesions in my frontal lobes.

The interesting thing about MS is lesions can heal and disappear. Simply because you currently have numerous lesions doesn't mean that will be the case in subsequent MRIs. I had numerous (too many to count) lesions on the c-spine, had another MRI done a few years later and I had a countable 3 on the c-spine . My Neurologist was not surprised by the MRI changes and said this is seen in those who use DMDs and by those who don't.

I truly hate this disease. However, I find this disease quite fascinating and hope I am still alive when researchers finally figure this disease out.