Initial Symptoms and Types of MS

[Suzie9]

I know there are sometimes first symptoms you can have which may indicate what type of MS you are going to have. Like for example sensory symptoms being a sign of a less severe form of MS and weakness being an indicator of maybe a worse form. Though obviously there are always exceptions. My question is, as someone diagnosed with CIS and sensory symptoms, With a progressive form, where they say weakness of maybe the legs can one of the first symptoms, is this from the CIS or from when you are diagnosed?

I started with sudden paraethesia around my spine and have had this main symptom on and off (it is better with yoga), for several years. I have tried to ask my Neuro and MS nurse if there is any sign of what type of MS I may have and they won't give me an answer. Just that leg weakness is often a sign of a progressive form but spine problems are too.
I guess they are just not allowed to say but does anyone here know much about this?

Is the fact that this first symptom of mine has never gone away usual for CIS or RRMS? If I had a progressive form would I have not got worse since my first symptom over these last few years?

[Suzie9]

Thank you for your replies. I guess the thing that concerns me the most at the moment is that people keep saying I should be on meds but my Neuro says not and that in the UK I would need to have nine lesions or more to qualify and I have four.

I have an LP in Feb. but my Neuro didn't want to do that either, its just that I am not happy with this doing nothing and wait and see approach. She isn't keen on me as a patient I think as I question everything. She did say I have a 60% chance of going 5 years before an attack which is the most I have ever got out of her.

Despite my investigatory nature though I am pretty positive and happy most of the time. After all none of us know what is round the corner, MS or not.

Aimee.

[doni54]

Hi Suze,

I'm undx, but know how important it is to you to know how your MS might progress.  Ess and Shell have given you great answers and I agree with them both.

It would be so nice for those researching MS, if they could come up with better and faster diagnostic criteria and that they could, when making this dx, know at what rate the MS will progress.  I hope not, but it will probably be years before this happens.

My first, biggest and continuing problem is weakness in right arm and leg and now in both legs and arms.  My progression has been pretty scary over the last two years, so I'm praying for a dx this year.

Take care.
doni

[sllowe]

Hey Suzy Girl,

I'd love to know too, predict the future based on how I presented, get a little "heads up" on what I'm in for, etc.  Put all of my initial problems and my ongoing ones into a magic ball, and ask it "whats next?"  

Essy does describe the problem well.  Though I do think that "some" Drs can make predictions based on their patient load, their experiences and depending on how long they have been in practice with a variety of MS patients.  

Not saying that they would be spot on, because the disease is so unpredictable, but I still think that would be the type of Dr. who's prediction would be creditable. One that can say something like this for example "the vast majority of my patients with spinal lesions go on to develop leg weakness, walking issues, etc.."

Hey! Where can we get us one of these Drs huh?

Hang in there honey, hope more participate w/this discussion because you've brought up something that we many of us wonder about.

ttys,
Shell

[essdipity]

I do understand your wanting to know this, but I fear there's no answer at this point. Everyone's MS is different, and that, I think, is why your doctor won't weigh in with an opinion.

It's important to recognize that generalizations about types of symptoms and age at onset are just that---vast generalizations. If a very large group of MSers were sorted out, most of them would fit into groups where disease course is more easily predicted. So yes, most people with early sensory symptoms will have a more manageable disease. But by far not everyone. And what about someone who has only sensory symptoms but also was "old" at disease onset? Two opposite criteria. (That's me, by the way.)

The best thing we can do to slow progression is to use one of the disease-modifying drugs. That has been repeatedly demonstrated scientifically. It doesn't mean that everyone will benefit, of course, and there's also no way of determining how much worse an individual might have been without a DMD. But still, they're the best act in town. Even someone with CIS should be on one of these meds. This isn't merely MY opinion, it's the stance of MS specialists world-wide.

I know this isn't the kind of answer you want, but anything else would not be true. Many of us have had initial symptoms that have never remitted, but if they're liveable and nothing worse has happened, that's all to the good. Even those with clear RRMS or PPMS cannot predict what will happen tomorrow. So it's best just to develop the most positive attitude you can, and live your life fully today.

ess