Please- Is there anyone in similar DMD predicament- lesions vs dis level?

[SonyaK]

Hi!
Just a quick backstory- diagnosed at 25 yrs old in Jan 2000 (had symptoms yrs before) with 7-10 lesions. Immediately went on Avonex, then when lesions found on next MRI 18 mos., switched to Rebif. On Rebif for years, but no insurance, so no MRIs. Finally had MRI 7? yrs later and like 40-50 lesions. After having 3 attacks a year, switched to Copaxone. Still had lesions, so added ivsm for years (500 mg a month).

When changed neuros, she put me on Beta, but I was allergic. Don’t want Ty because I’m JCV+. After getting back on Copaxone, I have 1 attack a year, but still getting MRI every 6 mos—sometimes lesions, sometimes not. Even with IVSM, still couple lesions sometimes- report now says ‘innumerable’ now (they quit counting after 70). But, here’s the thing- I’m a disability level 0 (her words), so I feel like I’m doing the right thing for me right now. C has been great. I’ve lost 35 lbs going to the gym and dieting. I feel awesome! So, I dropped the ivsm. I’ve had gallons of the stuff over the years. I have another 40 lbs to lose and my family to watch over.

Then, neuro pressured me into trying Tec, telling me that I’ll become “paralyzed and demented” from lesions if I don’t do something. So, I reluctantly agreed to try Tec. Didn’t want to because I always get the worst side effects from pills. Took Tec for 3 of the worst days EVER!!! Decided not taking another pill (Tec or the others)! Perhaps I’m short-sighted, I'm 39 and I want to feel good now. I can always change later when/if my situation changes. But I’m afraid my neuro is going to freak out on me when I call her and ask for C again.

Is there anyone else in similar situation? I’ve been crying for 3 days, wondering if it’s even worth going on with my life… Even if my dr. thinks I’m stupid (and maybe I am), shouldn’t I still deserve to choose my own med? Sorry for rambling. The stress from this is going to cause me to flare and then she’ll say she told me so… In the end, is it selfish to do what feels right to me?

[October22]

How can your doctor know what will happen to you? You have "too many to count" lesions and are doing great and others have a few lesions and aren't.

If there's one consistent fact I've read about MS, it's that there's no consistency in symptoms among people with MS.

I'm a newbie and know next to nothing --- except: it's your body and no one knows it better than you! No one (especially a doctor) should ever make you feel stupid or pressure you into something you're not comfortable with!

Maybe it's time to get a second opinion?

Wishing you peace with whatever decision you make!!!

[Kimba22]

Then, neuro pressured me into trying Tec, telling me that I’ll become “paralyzed and demented” from lesions if I don’t do something.

First of all, let me preface this by saying NO ONE has a crystal ball to know exactly what will happen.

It's not all about the number of lesions, either, it's more about where they are located. Some people have many more lesions than others, yet still have a lower level of disability.

I think what your neuro is worried about is the damage sustained long term in regards to your level of 'potential' disability. What you are experiencing today isn't necessarily what you'll be dealing with down the road. It can take years before you experience disability from the lesions you already have. She is also concerned about what impact any future lesions could have.

Unfortunately, neuros don't usually explain their reasoning in simple terms we can always understand.

This IS your decision, but I hope I explained why your neuro is more concerned than you are right now.

There are several threads on this site from those who are taking Tecfidera. They may offer advice on how to overcome the side effects.

Best wishes on whatever you decide,

[SonyaK]

Thank you so much for the helpful replies. As for Tecfidera, I followed all the advice I could find on here, which is awesome! I had very little flushing. But I had horrible vertigo and other problems that haven't been mentioned in addition to the stomach distress despite it all. I just wish I could tolerate oral meds better. Even non-ms pills cause me problems.

Thank you for the explanation about the lesions. I am as concerned as my neuro, and that's why I'm so sad. The only dmd(CRAB) that has done anything for me is Copaxone w/ the less attacks and feeling better. The dmds I haven't tried yet are outside my comfort zone. So stressful.

Thanks again! I feel a little better now.

[Alicious]

Hi Sonya,

I hear you. I'm about your age, I have brain lesions and c-spine lesions, and (knock on wood) EDSS of 0. I want to keep that, but taking meds that make me feel awful seems like a crazy way to stay healthy, too. I've had a hard time finding a med I could tolerate, and oddly, Tec is that med (clearly it wasn't for you). I've been told I am unusually sensitive to medication in general, and DMDs in particular, so I know what you are saying.

It's incredibly stressful to be in a place where it seems like there are no good options, yet you are pressured to pick something. I second the idea of getting a second opinion, because the "paralyzed and demented" line is absolutely rotten. It was cruel, frankly.

I never thought I'd find a med I could tolerate (Copaxone = 1 year of nausea, Rebif = hives and illness every day, Avonex = suicidal thoughts and 3 days of illness/week, Aubagio = gastric issues/hair loss), and I was both excited and terrified to try something new, but whaddya know? The new one has been really easy on me. Maybe the same could happen to you on a new med. You can always come off of it if not.

Anyhow, you need to do what feels right for you, but maybe another doc can help you reach a decision about your best options and work with you to help make you comfortable with whatever you choose.

[SonyaK]

Alicious-
Thank you for replying. I'm so happy to hear Tec works for you! Thank you for your kind words of support. I finally just mustered the courage to call my neuro and tell her I want to get back on Copaxone. I'm crossing my fingers that she'll be friendly about it.

[Fed Up]

SonyaK, I've read this and thought about it, plenty.

Somehow, what I have come to believe from it is:

Any doc that refers to advanced stages of M.S. as "paralyzed and demented" seems to know very little about the disease..

I think I'd be ready to ask this M.D.... how the 'rest' of her M.S. patients do. And that might be a pretty good clue to her...you don't want to be like the 'rest' of her patients and deserve to be treated with what you feel will work.

Still, I think I'd like to have a 'conversation' about your M.D.'s abilities...if that is what she "AIMS" for in her treatments, and you AIM higher--a change maybe indicated.

For some reason, it is like a thorn in my side, just thinking about that. It MIGHT BE a Possibility for many, but certainly not ALL. Now, IF she states-it is a possibility, that is different...but, I am not reading that. It is possible that you may never get that way...

Demented..does she really think all M.S. patients get that way; many here are anything but that and most likely, will never be. I do have cog fog and problems with it..so, most likely I will be just that-one day, but to generalize.. a thorn in my side. Should be with you, more so, than her lack of wanting to treat you with something you AGREE to the side-effects of.

Guess even more so, since I am have been down a few days. fed

[SonyaK]

Fed Up- Thank you so much for replying! You bring up some reassuring points. After reading your post, I did some more looking around on cognitive stuff and found this on the MS Society page:

"Cognitive changes are common in people with MS—approximately 50% of people with MS will develop problems with cognition. Only 5-10% of persons with MS develop problems severe enough to interfere significantly with everyday activities."

The same page does state that there may be a correlation between cognitive function and number of lesions and lesion area on MRI, as well as brain atrophy. But given the above information, you're right, it was wrong of my dr. to make such generalizations.

Also, I found this thread on this board from a few years ago where a mri tech talks about why he feels that lesion counts may be exaggerated due to technical factors? Interesting...

http://www.msworld.org/forum/showthread.php?t=116939

Guess even more so, since I am have been down a few days. fed

Hope you feel better soon!

[Alicious]

Alicious-
Thank you for replying. I'm so happy to hear Tec works for you! Thank you for your kind words of support. I finally just mustered the courage to call my neuro and tell her I want to get back on Copaxone. I'm crossing my fingers that she'll be friendly about it.

Hopefully it will go well, or at least will be a real discussion. Good luck to you, and keep us posted!

[onlyairfare]

My first neurologist also gave me the "scare treatment" threatening that I would be blind and paralyzed (I had presented with ON and a very weak left leg) if I did not follow his commands. He wanted me to terminate my early pregnancy so that he could do a bunch of X-ray tests, and this was back in 1982 when there were not even any DMD's! I told him that I might be "blind and paralyzed" but at least I would be a Mother. That was the last neuro I saw for 20 years.

I admit it was a gamble, and that I have been lucky, but I have 3 healthy kids and almost no visible disability. In 2002 I had a relapse that prompted me to seek neurological care, and treatment with DMD's, (Copaxone and now Gilenya) - my trustworthy family doctor persuaded me I should do that. But I wouldn't continue with any bullying neurologists; if they aren't willing to have a back-and-forth discussion, and acknowledge that I have a role in the decision making, then I go to a different doctor.

And as far as my number of lesions, I have no idea how many they are, but I do know that one radiologist said I had "innumerable lesions" while another says "a relatively light burden of disease." They were looking at the SAME MRI!

SonyaK if you feel Copaxone works best, that is probably what you should take unless your neuro has a very good explanation for a different/better choice for you.

[Fed Up]

SonyaK, thank you for that information...somehow, demented really drew ire from me and I stumbled over your post many times...wondering if I were the only one so angry with that statement.

If one shots oneself in the foot, then that is the direction we go; if we shot for the stars....all things are possible!
Keep looking upward!

thank you for the well-wishes.

Onlyairfair; sure confirmed my suspicion!

Somehow thinking my advance stage would leave me without the ability to reason...made me angry. But then, I am one of the 5-10%, unfortunately. fed