Questions about disease progression

[KimmieH]

I had an MRI in July that my Neuro said may be showing lesions that were not present last year and also some sensory loss that wasn't present in January of 2015. Because of these, he sent me for another MRI at the beginning of January 2016. I received a call from the nurse at my Neuros office letting me know that I have at least two new lesions and an active one in a new location.

He wants me to talk to the nurse practitioner at his office about changing dmd's. I have been on Copaxone for just over a year.
Is it normal to switch meds so soon?
Is there a "normal" rate of progression?
I feel like I just got comfortable with the Cooaxone. I also feel blindsided because I was under the impression that the meds were long term.

[kelm10]

not uncommon

It is not uncommon to switch meds, espcially if you have been on them for a year. Some neuros use 6 month and some use a year. And, if you are progressing with the medication, it might be a wise choice. But, that is what the appointment with the NP will help with.

There is many other medications out there. They often start with copaxone because of the least side effects. But, may not be effective for some. So, then they try one of the other meds, that may have more effective rate for you.

Unfortunately, one med may work for one patient, it may not on another. Thankfully, there are other choices out there for you.

[hunterd]

like kelm said, no two MS patients are exactly of like. That not only applies to their choice of DMT, but also to their progression. I wish I had a crystal ball and could tell you what to expect in your future, but sadly I do not, and I cannot. I can only say good luck!

[Jules A]

As others have said there is no "typical" course of MS.

The 1/2 life of Copaxone is rather long which means it takes a while to reach full efficacy as well as will take a while to clear from your system. I personally applaud his approach to change medications after giving it a fair chance. There are too many choices of medications now to stay with one that is not holding progression at bay whether that be worsening function or adverse changes in MRI, just my non-neurologist opinion.

[JerryD]

KimmieH,
Are you diagnosed with the relapsing-remitting form of this MonSter (MS). If you follow the discussions on this board, regularly, you will find out that there is nothing regular that happens to anyone that has MS. There are no positives with MS (unless getting a handicap parking placard and , legally, being able to park in the handicap spots ) ! Good luck

[pb909]

To add to what others have stated my switching of meds to help my PPMS has been driven by the new approved entries into the market. I went from Tysabri to Aubagio once released, then to Lemtrada when released.

Two more positives other than the HC placard are electricity and natural gas medical baseline allowances here in So. CA!

[Jules A]

KimmieH,
There are no positives with MS (unless getting a handicap parking placard and , legally, being able to park in the handicap spots ) ! Good luck

Well said, sigh.

[KimmieH]

I appreciate you all taking the time to give feedback.

Yes, the relapsing remitting MonSter. With all that I've read here elsewhere, I should feel fortunate to have treatment options, but honestly I'm just feeling like I did when I got the initial diagnoses a year and a half ago... Shock.

I just adjusted to the Copaxone side effects and finally in a routine. I'm scared of what comes next.

[pennstater]

I'm just feeling like I did when I got the initial diagnoses a year and a half ago... Shock.

I just adjusted to the Copaxone side effects and finally in a routine. I'm scared of what comes next.

Hi KimmieH. I can assure you, it's pretty normal to feel that way. Whenever there is a major change or symptom progression, it brings back all the stages of grief. It is always scary and the fear of the unknown looms large. That being said, you don't want to get to the point where you are extremely stressed and anxious. If that is occurring, make sure your neuro knows about it.

Try to remind yourself how strong you are. You did adapt to your diagnosis and your meds. You will again. People are always here to help along the way.

[KimmieH]

[QUOTE=pennstater you don't want to get to the point where you are extremely stressed and anxious. If that is occurring, make sure your neuro knows about it.
[/QUOTE]

The quote above defines me at the moment. I am not sure I have adapted to my diagnosis as well as I pretend. I think I accepted it for a little while, optimistically believing that the quick road to diagnosis and starting a dmd would prevent progression and life would continue as normal.

I struggle to feel normal, not only the fatigue, not just the random symptoms that I question if I'm imagining, but the overwhelming sadness that hits.

I see the burden I am becoming to my family both financially and emotionally, and I want to continue pretending.

Though I haven't posted a lot on this site, it is great to have somewhere to voice fears because I'd like to avoid putting it all on my family.

Thanks for the feedback.

[palmtree]

The quote above defines me at the moment. I am not sure I have adapted to my diagnosis as well as I pretend. I think I accepted it for a little while, optimistically believing that the quick road to diagnosis and starting a dmd would prevent progression and life would continue as normal.

I struggle to feel normal, not only the fatigue, not just the random symptoms that I question if I'm imagining, but the overwhelming sadness that hits.

I see the burden I am becoming to my family both financially and emotionally, and I want to continue pretending.

Though I haven't posted a lot on this site, it is great to have somewhere to voice fears because I'd like to avoid putting it all on my family.

Thanks for the feedback.

You describe the way I felt those first few months. I send you cyber hugs.☔️⛅️☀️

[cjtmn]

I can relate

The quote above defines me at the moment. I am not sure I have adapted to my diagnosis as well as I pretend. I think I accepted it for a little while, optimistically believing that the quick road to diagnosis and starting a dmd would prevent progression and life would continue as normal.

I struggle to feel normal, not only the fatigue, not just the random symptoms that I question if I'm imagining, but the overwhelming sadness that hits.

I see the burden I am becoming to my family both financially and emotionally, and I want to continue pretending.

Though I haven't posted a lot on this site, it is great to have somewhere to voice fears because I'd like to avoid putting it all on my family.

Thanks for the feedback.

Yep...all of that. I'm only Dx'd since November, still haven't started a DMD yet, and feeling 100% with you here. While it changes nothing, just know you are not alone.

Cheryl

[bakebr]

PLEGRIDY

Yep...all of that. I'm only Dx'd since November, still haven't started a DMD yet, and feeling 100% with you here. While it changes nothing, just know you are not alone.

Cheryl

Looks like I'm in the midst of a major relaps. First since my Dx 2001!, Severe case of right Drop-foot. Taking Baclophen Rx by my PC , next Neuro visit sched 17 Mar... on waiting list for a sooner opening. I Stopped taking my Rebif Jan 2013!, Who's to say if it was a wise choice, I was fed up with the side effects.I did Signed up on the Plegridy web site to recieve info. Have taken Avonex before and believe PLEGRIDY would be best suited for my current life style. Have had some indications for leasons in my spine last 3 MRI's. Have resigned to the fact this Monster will do what it wants when if wants. Just have to Keep as active as you possiably can, keeping a positive outlook.
Good luck.

[cjtmn]

Ugh!

I am sorry to hear about your relapse, bakebr! I just started Plegridy last Friday. The side effects aren't fun, but I'm hopeful they will taper over time. Every 2 weeks to inject seems worth it right now. I hope you have fully recovered by now.

Cheryl

[pennstater]

The quote above defines me at the moment. I am not sure I have adapted to my diagnosis as well as I pretend. I think I accepted it for a little while, optimistically believing that the quick road to diagnosis and starting a dmd would prevent progression and life would continue as normal.

I struggle to feel normal, not only the fatigue, not just the random symptoms that I question if I'm imagining, but the overwhelming sadness that hits.

I see the burden I am becoming to my family both financially and emotionally, and I want to continue pretending.

Though I haven't posted a lot on this site, it is great to have somewhere to voice fears because I'd like to avoid putting it all on my family.

Thanks for the feedback.

Hi KimmieH.

I wanted to check and see how you are doing. Your post here echoes a lot of newly diagnosed feelings. My first neuro told me it takes on average, 2 years to get thru the diagnosis and fully accept it. He was right on for me. When things stayed static, put the brave front on, but as you said, partial denial, even though injecting myself and neuro made me get 2nd opinion to try to move me past denial. When new symptoms or difficul relapse, anger, grief, etc...

The best thing I did for myself was go to a therapist. It gave me a safe place to get all my feelings out without worrying how my feelings were upsetting the family or close friends. Once I did this, it was easier to have some dialogue with family and friends. I could let them talk about how it was affecting them and their fears, share my feelings and fears. There were some tears on both ends, but having that open door became crucial later.

Yes, I have impacted my family emotionally and financially, but I didn't choose to. It just is. I also learned that just like cancer or other horrible diseases, MS does impact our lives, and the lives of all who love us. We should not feel guilty. We can only do our best, just as those around us can only do their best. Be your own best friend and shut down the inner critic.

If you haven't already, make sure your neuro knows you are at a difficult period right now in adjusting to your diagnosis. It sounds like you have a good one, very proactive doctor. If you don't see a therapist already, he may know of one experienced with MS or other chronic illnesses. It could take a little bit. My first one reacted to my fears, as she had no experience with MS. Not what I needed. Second one, came from a referral at local MS support group.

Please let us know how you are doing. Hugs.