No more treatment???

[poorkid]

Hi everyone!  I have been on Betaseron since last April.  I was diagnosed at the same time at age 49.   I went in on Dec 9th for a follow up MRI.

Today I went to the neuro for the "reading" of my MRI.  I have 2 new lesions, one on my spine and one on my brain stem.

I have had 2 documented attacks since I started treatment.

My neuro (MS Specialist) said today that if I have 1 more attack in the next year, NO MORE TREATMENT FOR ME.

What does that mean??

Of course, I didn't ask.  Does that mean no more treatment of any kind or just switching to another drug?

I have been progressing fairly rapidly.  I offered myself up for any trials and he said that is not an option at this point.

Just curious as to what he may have meant.  I KNOW I should have asked but of course, we all just kind of sit there and listen and then think later.  

Also, the majority of my lesions have been on my spinal cord.  Does anyone know what symptoms brain stem lesions cause?

Thank you in advance for any advice.  

[poorkid]

My next appt is in April.  Hopefully, I will not have an attack before then.  I am willing to switch neuros but feel he is the best there is.  I just have to be a bit more agressive with my questions.

I AM feeling better but still in the middle of an attack.  I have held out on any steroids throughout each attack but will probably give it a try at some point.  

This attack is causing numbness on my left side and horrible facial pain.  (Which I think can happen with a brain stem lesion)

Thank you for the concern!

[gooddays]

Hi I hope you are feeling better today!!!!!

When is your next appointment with your dr?  Are you writing down all the questions that you want to ask him/her?  Are you willing to switch neuros to get a second opinion about no more treatment after Betaseron?

Please let us know, how you are feeling today.

Take care,

Zulma

[Deb61]

I agree with everything that has been said and want to add on to what Zulma said.  I have been on Copaxone about a year; however, my sister, who has a more aggressive disease course, started Tysabri about 10 months ago.  When she started Tysabri, the doctor was thinking that she may be starting to convert to SPMS.  However, after starting this drug, there hasn't been any progression of lesions on her brain--which are mostly on the brain stem.  Research this--you will see lots of really positive stories from people on this drug.  You may want to bring up this treatment option to your neuro, if your DMD's options start failing you.  

Deb

[Heather3418]

I can totally understand your statement that you think of your doctor as "God."  I don't think you mean that in the literal sense.  We do have a tendency to put all of our trust in our doctors and look at them to help heal us.  It is like a "God complex."

I look at my Neuro as my last resort for help.  This has nothing to do with my faith in God.  I already have that.  I believe this great Neuro of mine was of some kind of diviine intervention, to finally get me with a doctor that actually cares deeply for her patients.  I searched a LONG time.

But like the others have said, if you are afraid to ask questions of your Neuro and get them answered to your satisfaction, then you really need to look for another Neuro.  When you have MS, you are talking about a lifelong illness and having a good doctor to go through those years with, is important, to say the least.

I don't think I have ever read that any of the DMD's will totally prevent an attack or more lesions.  I shudder to think of what my course of MS would be without the use of DMD's.  I am just thankful that my Copaxone seems to be slowing down this disease and slowing down any loss of brain volume.  I never expected any of the DMD's to totally halt the disease.  That's just my opinion....

Take care dearheart and see if you can get your questions answered...if not, time to move on.  Hard to do, but essential to your long term health.

Big Forum Hugs,
Heather
Earth Mother

[gooddays]

Unless your doctor has a contract with the Betaseron manufacturer, he/she would try to prescribe any of the other DMD on the market to see if any other will help you.

Most of us who are on any of the DMD may have flare ups and even lesions, but they come slower that if you were not on any of the medication.

And as you may know, the DMD are not only interferons there are others like Copaxone that is a "glatimere something", which works differently from the interferons.  BTW there is also an infusion called Tysabri, which is one a month, Novantrone, a chemotherapy which is used every three months for a period of one year.  As you can see there are other options that your "god" doctor could have told you. If he really was a "god" doctor, he would have known all these options.

Again, my recommendation is that you find a doctor who is less of a "god" and more of a neurologist with vast knowledge in MS or even specialized in MS, who you would be able to ask question and not feel that your "god" doctor knows it all because of just one treatment not working.  If you find one that you can ask your heart out, write down your questions before your appointments, that way you do not forget something that may be important to know.  Humans by nature, tend to get nervous when we first have an appointment with a new doctor.

Take care of yourself,

Zulma

[young at heart]

PK,

NOT ALL DMD  ARE  EFFECTIVE FOR ONE PERSON.IF ONE DOESN'T WORK A NEURO WILL TRY A NEW ONE.

EVEN THOUGH  WE ARE ON THE DMD ,WE STILL GET LESIONS AND HAVE THE FLAIR UPS.

T-LYNN

[poorkid]

Thank you for your answers.  You are correct in the assumption that I should have questioned what he was actually saying.  

It was my own fault and I will continue the treatment until I am told differently.

I think my question should have been phrased this way:

If one treatment does not work and the MS continues to progress, do most Dr's try another interferon or simply stop all treatment.? I had the impression that if my Betaseron is not working, nothing would.  Has anyone had this experience?

[young at heart]

POORKID,

IN ALL HONESTY IF YOUR LOOKING AT YOUR DR AS GOD,I'D FIND ONE I COULD TALK TO.

BRAIN STEM LESIONS WILL EFFECT SEVERAL ASPECTS OF YOUR BODY,THE BREATHING,BALANCE,HEARING,VISON TO ARM AND LEG USE,DEPENDS WHERE THE LESIONS ARE.

T-LYNN

[gooddays]

Your comment about looking at your doctor as god and you feeling like an idiot, gives the impression that you are either afraid to ask or he does not allow you to.  If this is the case maybe you should look for another one who may be more open to your questions and may provide with the security that you can count on him/her whenever the need arises.

If I were you, I would not stop taking my shots until I have a clear reason for my neuro to say that after the Betaseron there would be no more treatment.  Also, I would like to know if you have used any other DMD.  If not, ask your "god" of a doctor if you can be switched to any of the others.

My question is because when I was having relapses every three months my doctor said that if they kept coming, she would change the Avonex to one of the other medications in market for treating MS.  My relapses are triggered by a lot of stressors, so I started taking better care of myself and it helped.

I do not post very often, but I constantly read the forum to see what is going on with everyone.  I am sorry you felt so left out, it should not have happened.  This forum is to help others who are in better or worst shape than any of us.  There is no stupid question to be asked, there may probably be others with the same one but are afraid to ask.

Ask your heart out, someone would be there to answer, even if it is only one person who can identify with what you are going through.

Please consider the option of changing to a more confortable doctor to talk to.  Now that you have a dx, there would be others who have better communication skills and are willing to hear you out and answer your questions.  Mine does, thank goodness for her.

Take care,

Zulma  (Gooddays)

[shoshin]

I'm sorry you've got so much stuff going on and also that you didn't feel like you got a lot of responses to your question. I tend to only answer questions where I feel like I have something to add and I think I lot of people are like that. Although the people on this forum know a lot, we don't know everything, and sometimes all that people get are sort of empathetic responses because nobody really knows the answer.

I don't know the answer to your question, but I can empathize because a similar thing happened to me. I am in a trial for FTY720/fingolimod and for a long time I seemed to keep getting worse anyway (I'm sort of stable now and slightly better than I was at my worst except on the paresthesia/numbness front, although how much of that is due to symptomatic drugs is unclear). My neuro finally got exasperated at my wishy-washiness over the trial and said he had "nothing else" for me since I don't seem to have any acute relapses or inflammation. I'd rather he be honest, but it's still not a nice thing to hear.

I agree with everyone that you should follow up with your neuro and get some clarification on what he meant.

sho

[Quixotic1]

It's okay...  :))

[poorkid]

Quix:
Thank you, honey for your response.  I think I know the route MS is taking me.  My neuro is very good but quite full of himself.  

I think of him as a "god" and am quite intimidated at each visit.  I simply sit there, and act like an idiot.  My own fault.  My shot is sitting here next to me and I am wondering why I even bother.  I will take it and continue to pray for the best.  I just would like to be in control of this stupid disease!!!

What wonderful people you all are!  I am so sorry to be a pain!!

[Quixotic1]

I agree that it is hard to read a neuro's mind and many doctors are not good communicators.  You have had some progression both with attacks and with MRI lesions in the 10 months on Betaseron.

I don't know the statistics of Betaseron with regard to when it could be expected to really exert its effect.  I know that it isn't immediate.  With regard to my Avonex, when I was still having attacks at 6 months, my neuro said that Avonex wasn't yet at its maximum effect and we couldn't count them.  I know Betaseron acts somewhat more quickly, but you would have to look at when your two attacks were: how long after starting the drug.  If they were sooner rather than later they are less of an indication that the drug is failing.

The same applies to the lesions.  When was the previous MRI?  Was it exactly when you started the med or earlier?  Is it possible the two lesions popped up before or just as you were starting the med?

His comment about no more treatment may have indicated that he thought you actually have Primary Progressive MS.  Is this possible with the way your disease has progessed?  As of now, there is no approved treatment for PPMS.

Or have you had a pretty clear history of Relapsing and Remissions?  If, so there ARE approved treatments for that.

I agree.  His statement begged for some more information and it was thoughtless of him not to offer any.  It is not appropriate for you to wait until then to get that kind of question asked.

He may be one of the neurologist we have come across who have a futilistic approach to progressive MS of any kind and don't want to deal with them.  I think we all should run as fast as our little feet can carry us from people like that.

I think it would be appropriate for you to write a letter to your neuro and ask what your thoughts were.  Tell him that his statement frightened you and made you think you might be approaching a condition with no hope.  Ask for a response to give you some more information before your next visit in two months.  Then call his office and get their fax number.  Fax the letter to his office.  Or send it by mail and incluse a self-addressed stamped envelope to make it totally easy.  If he refuses, it might be time to consider finding a more compassionate neurologist.

The question about spinal and brainstem lesions I am going to leave until later.  I hope someone will come in and add some info, because that is a long answer.

Sorry to have taken so long to answer.

Quix

[doni54]

Hi poorkid, and welcome to the forum.  I'm like Laura, I can't really give you an answer to what your neuro could have meant.  But, if you don't feel like your current neuro is doing what is best for you, maybe it's time to find a better one?

I am undx, but have learned that you need to ask questions.  It is your health at risk and you need someone who will be open and honest with you and explain why they are saying the things they are saying.

You need to always know what is going on with yourself and the only way to do that is to ask questions and expect the questions to be answered in a way that you fully understand!!  You don't need guess work when it effects your health.

I wish you the best, and hope that things get better for you.  Stand up for yourself!!!

Take care,
doni

[poorkid]

Thanks Lulu.  I don't see him again until April.  I will wait until then to ask.  I think I already know the answer!

[Lulu54]

Hi PK, I'm sorry but I don't think any of us can second guess this one and be sure of what your neuro really meant.  Perhaps he was speaking out of pure frustration at seeing your condition advance?  When do you see him again?  If you can't wait until then to get this answer then call his office and ask.  

I'm trying to figure out too what symptoms come from brain stem lesions - I think they include balance, dizziness, speech, swallowing.  There are probably more and please somene out there correct me if I'm wrong.

my best,
Lulu