need advice

[fatigued]

curreently I have 4 lesions, 3 on optic nerve and 1 in brainstem. I noticed my old dizzy symptom (from brain stem) return this week as well as a new bout of ON. Is it common to get exact same symptoms return?

Also, if I ever get secondary progressine ms, does that mean I will have future bouts of ON or is there a chance it could progress anywhere?

Im scared of going blind in the eye that has had ON in as its recovered ok before but worried because my MS has hit there 3 times now that its a foregone conclusion ON will return.

If I got SP tomorrow would that mean Im definately going to get attacks on my optic nerve?

I know SP is progressive but not sure if it means progressive as a whole, meaning anywhere can be attacked or if its going to be returning all the time to optic nerve/previous lesion.

[kelm10]

these type of questions

These type of questions are best answered by your neuro or a nurse in your neuro's office.

You have a legitimate worry in regards blindness. But, a constant focus on your symptoms will not help. It just can cause stress that can make symptoms appear or get worse. There are so many contributing factors that can bring on symptoms including stress, dehydration, elevated core temperature from heat, or infection.

The neurologist's office can see and/or talk to you to assess these items.

You can become blind from ON wether you are RR or SP. You can also not go blind with both.

[jreagan70]

Hi fatigued:

You have asked the same questions before in various threads, and all of them have been given good answers. So if you'll go back to all of your previous threads, you'll get some very good information.

I agree with everything poster kelm10 has posted.

It's pretty obvious that you're slipping into anxiety about your future, and that isn't good. Anxiety robs your happiness and can lead you into making bad decisions. MS is full of uncertainty, and your success with living with MS depends on how well you make peace with uncertainty.

Have a nice long talk with your neurologist about your concerns if that will make you feel better. If that isn't enough, then it's a good idea to consider talking with a mental health professional who can help you with ways to deal with your worries.

Take care.

[jreagan70]

If I got SP tomorrow would that mean Im definately going to get attacks on my optic nerve? <snip> I know SP is progressive but not sure if it means progressive as a whole, meaning anywhere can be attacked or if its going to be returning all the time to optic nerve/previous lesion.

If it's any consolation, you can't "get" secondary progressive "tomorrow." SP is a gradual process with an indefinite transition point that takes 10 to 15 years for about 50% of people with MS. It isn't something you wake up with one day.

SP doesn't have anything to do with the location of new attacks or what symptoms occur with a relapse. A person can have many attacks and still be in the relapsing-remitting stage, and the location of those episodes is unpredictable. Those relapses might or might not recover completely and still not indicate a transition to SP. One of the things that occurs with some people with SP is that they have fewer relapses rather than more. The indication of transition is a continuing decline whether or not there have been new relapses, wherever they occur.

Again, I'd like to suggest that you go back to all of your previous threads for the good information that you were given there, and also have a good talk with your neurologist about your questions.

It might also be helpful to do some more reading about SP. You can go to the website of the National Multiple Sclerosis Society (www.nmss.org) and search for "secondary progressive." Lots of good information there.

[fatigued]

I guess you're both right and I will have to ask my doc at next appt. I appreciate the advice you all give.

If it's any consolation, you can't "get" secondary progressive "tomorrow." SP is a gradual process with an indefinite transition point that takes 10 to 15 years for about 50% of people with MS. It isn't something you wake up with one day.

I guess I am worried because I have had MS over 10 years and in the first 3 years I had 2 seperate attacks of ON plus 1 vertigo. I've been in remission for about 7 years and now suddenly I have ON again and a bout of vertigo. I always get confused with MS as its complicated.

So is this more about many many attacks before it becomes SP? Does SP only go back to old areas of previous damage or does it just make the rules up as it goes along and attack anywhere it wants to, for how ever it wants to?

[SNOOPY]

Hi fatigued,

This disease and when someone transitions to SPMS is different. I have been diagnosed with MS for 30 years and I was finally put into the SP category at my 28th year of diagnosis. Since diagnosis I have had 5 exacerbations but I have had symptoms of MS since I was a kid.

This disease is different for each of us and there is no way to predict when a person will transition from RRMS to SPMS.

Relapsing/remitting MS is usually an inflammatory stage and Secondary Progressive is a neurodegenerative stage. Although there is the thought that the disease is neurodegenerative from the beginning, who knows. That is the problem, there is still much that is not known about this disease.

This disease does what it wants, when it wants and to any part of the Central Nervous System. Where it will affect is anyone's guess.

[pennstater]

My understanding of SPMS is continual progression in the absence of inflammation/relapses.

The progression can be in areas where you had symptoms before and/or areas where you never felt symptoms before.

I have been diagnosed 9 years, but have had it at least 23. I had this conversation with my neuro, ad I began to get anxious. The talk helped, so as others said, it is worth having.

It is a grey area, when to make a change to SPMS. It changes what medication options are available. So if any question, neuro will retain RRMS so all the DMT options are open for you.

My neuro told me to be less concerned about that label. Focus on what I can control to keep myself feeling as strong ad I can(diet, stretches, activities to relieve stress, physical and mental exercises, socialize, etc..). Everyone's ability to engage in these type of activities will be different and change with time, but he said to try to do the best I can.

Once I was able to stop worrying so much if I had transitioned, it helped a lot.

On a different note, there are studies that indicate if your first symptoms are ON and you go longer than 5 years between 1st and 2nd relapses, it is generally a milder progression of disease. Of course there are no guarantees, but odds are in your favor.

[Teddy1101]

I would assume that if you already have lesions in these areas, a flare-up would present the same symptoms. Not everyone gets SP MS. We have better treatments now. If you are already on a treatment regime, you may wish to talk with your neuro about something more aggressive? My lesions have not changed place or size in 10 years, but I am on an IV med. I have brainstem lesions too, and have had flare-ups but no full on relapses. They make me get MRIs every six months, too.
Again, I would speak to Neuro instead of worrying yourself

Good Luck!