Experience Info. Please

[jkp79]

I have asked several times for informtion about how people go from RRMS to SPMS or was it PPMS the whole time. I have read and do understand the definitions of each, but the real world application seems a little harder to grasp. I am reaching out to people who have been there to discover how these definitions apply to my own MS, not for a dx or second opinion and I do understand that MS is unique as to its effects on everyone. We are all unique people and are disease is unique to us.

I make the above qualifiers because on previous posts people have directed me to research or have given me the definitions I have already read in response to my question.

I have been dx'ed for a little over a year and wasn't doing to bad during that first year. Now I have had two flares since the begining of the year and things are going downhill fast. My last MRI showed no active lessions but a 20% increase in two in my brain in 4 months.

I just need some perspective. Anybody. PLEASE.

[jcrain9663]

I can't speak to the transition to SPMS, but I have relevant experience with PPMS.

I was diagnosed with MS in 2007. It was presumed to be of fairly long duration, possibly 20 years. I believe my neuro suspected it was PPMS from the beginning because of my lack of a history of flares. Instead of flares, I just kept progressing very slowly. Also, I have relatively few lesions in my brain, but it has shrunk at a rate not consistent with my age. It was two years after an accumulating list of disabilities with no flares that I was told it was probably PPMS.

Generally, if you have identifiable flares or exacerbations, you are usually considered RRMS until evidence accumulates to the contrary. Sometimes, no response to steroids can suggest that one is PPMS. Also, people with PPMS usually have fewer lesions, and they are smaller.

With PPMS, it is believed that demyelination occurs throughout the brain, and thus is more difficult to visualize. Only if those areas that become demyelinated happen to be larger can they be seen, usually as lesions that are smaller than in RRMS.

My PPMS has sped up as I get older. I keep forgetting to ask my neuro if this is typical. Also, PPMS is not considered to be inflammatory in origin, and there is speculation by some that it might be a different disease entirely.

This is how it was explained to me.

[fourtimer]

I was diagnosed with M.S. in 1985, The Dr. did not say what "type" I had, but I had not experienced flares. After I began to feel numbness in my legs and walked with a small gait, I had an MRI, Spinal tap and other tests which all showed positive.

I progressed very slowly until my teenage son died in 1988 and the progression moved swiftly.

[jkp79]

Thanks so much for the response. I usally get none or those telling me to research wich I have done obsessively for the last year and a half.

I understand the medical definition of each type. And I know that type probably means very little. But, I am one of those people that for some reason is compelled to have a definition and can't get any from my doctor. I believe that she thinks I SPMS but doesn't want to say that in order to keep trying new things.

The steriods have little effect on me know and I must simply take them and hope they work or that I go into remission. But I have had to flares since February this year. They showed no active lesions. In the first there was no change from my last MRI but my left leg was still numb. In the second there were no active lessions either but two of them in my brain had grown by 20% and they were the biggest to start with.

I have too many symptoms to list but will say they have not gone away completely or even close to my baseline. So, I was just curious about personal stories and what people with experience might think.

I am sorry so long but I wanted to say thanks again for the replies.

[jcrain9663]

You can drive yourself crazy with the wondering, ask me how I know .

Usually, docs will try their best to avoid listing patients as primary, as that limits their options. They want their patients to have the option of using DMD's if they wish, and insurance will usually not pay for them if you are 'labeled' as PPMS, or even SPMS.

Somehow, it didn't even really surprise me when my doctor said sort of off-handedly that I was PPMS. I just sort of wondered why it took him so long to figure it out
Now I know that you must document the lack of remission and steady progression of symptoms with no/little sign of new lesions to definitively diagnose PPMS.

Neuros have so much experience dealing with this, and they know that for many, PPMS raises ugly thoughts of total disability sooner rather than later. That might be another reason they are reluctant to place that label on us.

[Frank54]

as it is my wife with PPMS. she was dx back in March, but they think she has had it since the early 90's. Her Dr. said PPMS and that there aren't any treatments.

She has been through lots of different things, chiroprators that said she was allergic to this or that, homeopathic Dr. in Arizona trying to balance different hormones, etc. Gluten free diet and organic foods.
Different things would change things for a time, but I sometimes wonder......was it just a new thought of feeling better as nothing lasted.

She has tingling in her fingers, can't feel small things with them, also has numbness in her legs and a slight gait in her walk, worse somedays. She is also getting to the point of wondering how fast things progress? She tires easily and takes short naps often.

[kellygrn]

Most doctors use RRMS whether you have RRMS or SPMS because some insurance companies will not pay for drugs if it is not specifically stated for SPMS.

RRMS gives you more choices of drugs.

KK