RRMS versus SPMS

[rendean]

Hi All !

Am looking for any advice or experience regarding the transition from RRMS to SPMS.

Since I have been on a downhill slide since January which has included unending bone pain in my legs with no relief yet, despite the medical try and error which I understand is necessary; cog fog affecting my job performance; new onset sudden violent vertigo resulting in 2 falls and a "rocking  boat loss of balance" on the days I manage to stay upright; left side weakness and now right sided weakness begining...these are new symptoms I still have my run of mill deficits left from earlier relapse.

All of my inflammatory markers are ALWAYS negative, CRP, ESR, CSF, ANA, etc. It was my understanding that when one moves into the progressive pahse it is because te body is doing an ineffcient job at repairing the myelin, hence the lack of inflammatory response.

The new symptoms remain despite prednisone 1000 mgs by mouth x 3 days, a decadron burst for occipatal neuraglia, IVSM 500 mgs (due to possible previous adverse effect) just 3 weeks ago and now a new round of IVSM at 1000mgs x 3 days in an attempt to call the vertigo and prevent further injury.

Any advice or sharing of personal experiences would be greatly appreciated!

Thanks,
Ren

[rendean]

It sounds like finally everything is going smoothly, minus the lack of sleep, and you will be using the elevator in no time at all. Who gets first dibs on the first ride?

I'm glad you have such an excellent contractor and that he is working with you and the available funds. Good news about your dad too!

When you finish your mosaic for your bathroom, please be sure and post pics. Same for the rest of the project, elevator and all.

Ren

[Quixotic1]

The buildout of the Basement is roaring along.  We have all the plumbing and electrical in with the walls completed and surfaced.  They just need to be painted.  The contractor is installing cabinetry now.  Next is the flooring.  The deck has been built and the house is being resided with HardiPlank.  Next is painting the whole basement and the exterior.

The elevator hoistway is complete and we are just waiting on delivery of the elevator for assembly inside.

The contractor is superb and has kept this project on time and moving along like lightening.  Funds are getting tight, and he has worked with us to tighten costs.  I am behind on the production of the glass mosaic for my bathroom, but it is coming along.

We have had out of town guests - my mom's cousin who is a family favorite and his new wife.  I am exhausted and still not sleeping well.  It's hard to nap when the siders are nailing each plank on individually, but the downstairs noise is about over.

The best part, tho, is how excited my parents are for the move.  My dad, who was becoming more and more apathetic, is so interested in every part of this whole thing.

Quix

[rendean]

Thanks for your response. I approached this subject with my neuro in an unexpected call from him to see how I was doing. He told me he can not, at this time, diagnose me with SPMS.

After the recent falls and IVSM, he said we would discuss it at length at my next visit (7/28) with him. I was just trying to look into the matter beforehand so that I could ask informed questions.

I appreciate your answer!

BTW, it's good to see you back. What phase is the renovation is at this point?

Ren

[Quixotic1]

I believe that the declaration of whether someone is moving or has moved from RRMS to SPMS is something each neurologist needs to make individually for each patient.  It is true that the progressive forms of MS have more non-inflammatory activity with the direct degeneration of neurons and a more progressive accumulation of disability.  But, the inflammatory markers are negative in MS, no matter what stage they might be in.

In SPMS there often is still a marked amount of inflammation and T2 lesion production, especially at the earlier parts of the transition.  People may have more frequent and worse relapses from which they recover very little or not at all.  But, you are correct that there is less healing of the lesions than is usually seen with RRMS.  SP
is marked by a more steady progression of disabling symptoms.

There are only a few meds approved for the treatment of SPMS, a couple of the original DMDs and the more potent drugs like Novantrone, which is cytotoxic (cell-killing) like cancer chem and Tysabri which is an antibody directed against one of the components of the immune system.  

Novantrone has direct cardiac toxicity which occurs little by little with each dose.  There is an ultimate limit on how much Novantrone you can receive.  After a course of Novantrone one will usually have some minor decrease in heart function.  Also, it is directly immunosuppressive, so there is risk of serious infection.

Tysabri can cause a serious brain infection called PML and this occurs roughly in 1 in 1000 patients.  It is sometimes fatal and sometimes causes neurologic damage.  But, it has been very successful at stopping the disease in many patients.

I don't have personal knowledge of any of this.  I hope others will chime in.

Quix