Mayo Clinic/Need Med Advice

[mb2815]

I have been at the Mayo Clinic for the last week.  It has been a very pleasant experience, given my circumstances.  They have been very efficient and very informative.  They have treated me like a person and not just a number.  I am very impressed.

I am looking for some personal advice on medications.  I was dx with CIS due to the fact that I am not really experiencing any symptoms other than the optic neuritis, which has resolved for the most part. I do have some areas of demylination but they are less than ten, small, and located more to the outer areas of the brain.  The MS specialist says I have a 90% chance of having a second attack and says if I decided to start medication it could delay that attack by as much as 3 years.  He was also very informative of the side effects of the meds.

I am just not sure what to do.  Do I hold on to the thought that I could be in the 10% and not ever develop MS or do I start meds?  I meet with a MS nurse consultant next week to get some more information.  I was just curious what anyone else might think or any advice I could get.  Thank you for your support!

[Quixotic1]

I have to quote your own word here. "My dads condition was allowed to get too far before he was started on meds."

It is a fact that the DMD's are more effective earlier in the disease than the same dose for the same length of time later in the disease.

Any relapse can bring with it irreversible disability.  This might be annoying tingling of a hand.  It might be loss of some vision.  In my case, an early attack was irreversible leg weakness needing a brace and, right now, a cane.

You can always stop the drugs at any time, but waiting, you cannot regain the time lost if you have not been on them.

What would you want your sister or daughter to do?

After you consider all of these questions, you'll be ready to make a decision.  What you may not have, tho, is perfect comfort knowing you have done the right thing.  None of us have that.  It's an unpredictable disease.  We all wish you strength and clarity of mind - and good luck - as you make your decision.

Quixc

[mb2815]

Thanks for the support.  My dads condition was allowed to get too far before he was started on meds.  He struggles with memory issues significantly.  He was diagnosed with epilepsy for about ten years before and I think that was clouding their diagnoses.  They now tell him that his seizures were probably caused by the MS.  

Thanks for the welcome.  Hopefully you will find answers soon.  

[6-paq]

Hello and welcome to the forum!

I have 3 brain lesions, no other positive tests and currently in limbo.  My neuro won't diagnose me with a CIS since I have other health issues that are causing symptoms.

I guess if I were to be diagnosed as a CIS, I would want to do everything possible to slow down the damage.  I HATE the thought of taking those injections, but I figure that's the only chance I'd have to help me to beat the odds of a rapid relapse.  

Also, they are working on new drugs all the time.  If I can slow this down, maybe there'll be some point in the near future where they either find the cure or find a way to repair the damage.  If the speed of my damage has been slowed down, that's that much less that needs to be repaired.

Just my .02, but I totally empathize ~ it IS a hard decision.  Especially when you have few symptoms.  I understand that, as I don't have many symptoms at this point either.  If you feel pretty decent, the thought of taking those meds, and their side effects, is hard to deal with.

How is your father doing with his MS?

Take care and welcome again, Pat :)

[mb2815]

I also forgot to add the symptom my husband seems to pick up on the most:  extreme mood swings.  I can go from happy to very irritated in a matter of seconds.  I do not know if this is related or not.

[mb2815]

I am 35 y/o female - my only real symptom was the optic neuritis.  I have some other symptoms that dont necessarily point to MS but could be related.  My health otherwise has been fair.  My father has both MS and epilepsy.

Seizures
Fatigue
Numbness/tingling in left foot/arm
Insomnia
Nystagmus
Decreased sex drive
Bowel frequency
Cold hands/feet

Thank you for your advice.  I will definitely take it into consideration.  I am hoping to have the lightbulb turn on and feel good about my decision.  I am just concerned about  the "what if's" if I do or if I don't.  I see the MS nurse consultant in a few days and hope that will also shed some light on my decision.  I appreciate all the advice and concern I have recieved from this forum.  You guys are great!

[julia111]

Hi!   Welcome to this wonderful forum!  

You will soon find how caring and knowledgeable everyone is and that it is a great group for those with MS, those in limboland and even those who have been diagnosed with something else but stick around for the support and friendship.

I agree with JonM, that "the whole idea of starting DMD's is to slow and reduce the accumulation of disablility."

I am dx. w/ fibromyalgia, but I have a lot of symptoms similar to MS.  DMD's do not exist for fibromyalgia.  

I think one of the reasons we pursue an accurate diagnoses is so that if it does happen to be MS, we can start the DMD's while the disease is in its early stages.  

I "think" its accurate to say that the earlier you start the DMD's, the biggest effect they will have on slowing the progression of the disease.

I haven't really done much research on the DMD's used for MS, but I know that if I were in your position I would seriously consider them.  

It's one thing to "throw a lot of meds" at treating symptoms of an illness - but it is HUGE that they have developed these DMD's.

Another thing to consider is that a large percentage of MS patients first present with Optic Neuritis as their first symptom of MS only to experience numbness, weakness, pain, bladder issues, cognitive issues  . . . in subsequent relapses.

Best wishes,
Julia

[JonM]

How severe was your last attack?  Are there lingering symptoms?  How old are you? What gender?  How is your health otherwise?

The whole idea of starting DMDs is to slow and reduce the accumulation of disability.  My first attack left me with some strength loss in my leg, permanent ringing in my ears, a patch of numb skin on my abdomen, and a modified feeling of pain in my feet.

Do you want to take the 90% chance of this happening to you?  Your MRI and symptoms do indicate MS.  The sooner you treat it the longer and better you will live and function.

JonM