Aa
Got a diagnosis....MS it is....duh!
So, after 3 months of cerebellar ataxia and truncal tremor after my 1st flare and admission that showed multiple lesions, I have been in another flare for about a week, extreme exhaustion, but I just can't sleep, and I started to have eye pain and blurred vision in my left eye. I have 5 more lesions on todays MRI of brain, diagnosis- Definite MS.
I went to ophthalmologist on Friday, showed thinning of optic nerve from damage. decreased pupillary light reflex.
So much for those lesions being caused by migraines as my previous neuro told me on last admission, and then again 2 months later when I still had ataxic gait, and nystagmus.
So My PMD told me that I needed to come up to the ER where the MS center is located and not wait for my out patient appointment next month, it turns out the hot bath I took without thinking a few weeks ago induced daily urinary incontinence since along with worsening weakness. So I probably threw myself right into this relapse like an idiot. No more hot baths for me!!!
So now I am getting Solumedrol for 5 days, then starting on DMTs. I am a nurse (currently working from home r/t symptoms) and choosing a DMT is a daunting task. any advise would be appreciated.
Words of wisdom for newly diagnosed also welcome!
I went to ophthalmologist on Friday, showed thinning of optic nerve from damage. decreased pupillary light reflex.
So much for those lesions being caused by migraines as my previous neuro told me on last admission, and then again 2 months later when I still had ataxic gait, and nystagmus.
So My PMD told me that I needed to come up to the ER where the MS center is located and not wait for my out patient appointment next month, it turns out the hot bath I took without thinking a few weeks ago induced daily urinary incontinence since along with worsening weakness. So I probably threw myself right into this relapse like an idiot. No more hot baths for me!!!
So now I am getting Solumedrol for 5 days, then starting on DMTs. I am a nurse (currently working from home r/t symptoms) and choosing a DMT is a daunting task. any advise would be appreciated.
Words of wisdom for newly diagnosed also welcome!
Hi Beth -
As everyone has stated, sorry to welcome you but glad you are here. I am fairly new as well and everyone is very knowledgeable and welcoming.
I had side effects and failure with Copaxone and am now about to begin Tecfidera. The known side effects are GI issues and flushing, in addition to lowing your white blood cell counts. I'm hoping that the side effects do not become more inclusive of other things the longer it is on the market. Please begin researching a DMD that fits your lifestyle as soon as possible.
Best wishes to you!
Lizzie
As everyone has stated, sorry to welcome you but glad you are here. I am fairly new as well and everyone is very knowledgeable and welcoming.
I had side effects and failure with Copaxone and am now about to begin Tecfidera. The known side effects are GI issues and flushing, in addition to lowing your white blood cell counts. I'm hoping that the side effects do not become more inclusive of other things the longer it is on the market. Please begin researching a DMD that fits your lifestyle as soon as possible.
Best wishes to you!
Lizzie
Dear Beth,
I am so sorry to learn that yet another person has joined the MS family. It is a real emotional rollercoaster the first year or so. Lots to learn about yourself and there's heaps of learning to be done about the people around you and the way they react to your MS. Most people won't really understand because we all look so darn well.
I did Copaxone for 15 months but had to stop because I had an usual reaction that caused my WBC to slide over a nine month period. I was so relieved that I didn't have some sort of bone marrow issue.
Anyway, I believe in doing whatever it takes to overcome the MonSter and for me that includes diet, exercise, and meditation as well as drugs. There isn't any cure yet for MS but certainly I trust the research to show that drugs and lifestyle changes can have a powerful effect on your quality of life going forward. That's is the bottom line for me. MS is a progressive disease so don't dilly dally.
You will certainly need time to grieve for the old you but your life is not over. Believe me, it is just the beginning. Life is still beautiful and if you take the time to see it from a different perspective then you may just see some new colours. I am grateful for the person that I have become as a result of my battle with MS. I wish you all the very best for your future.
Blessings
Alex
I am so sorry to learn that yet another person has joined the MS family. It is a real emotional rollercoaster the first year or so. Lots to learn about yourself and there's heaps of learning to be done about the people around you and the way they react to your MS. Most people won't really understand because we all look so darn well.
I did Copaxone for 15 months but had to stop because I had an usual reaction that caused my WBC to slide over a nine month period. I was so relieved that I didn't have some sort of bone marrow issue.
Anyway, I believe in doing whatever it takes to overcome the MonSter and for me that includes diet, exercise, and meditation as well as drugs. There isn't any cure yet for MS but certainly I trust the research to show that drugs and lifestyle changes can have a powerful effect on your quality of life going forward. That's is the bottom line for me. MS is a progressive disease so don't dilly dally.
You will certainly need time to grieve for the old you but your life is not over. Believe me, it is just the beginning. Life is still beautiful and if you take the time to see it from a different perspective then you may just see some new colours. I am grateful for the person that I have become as a result of my battle with MS. I wish you all the very best for your future.
Blessings
Alex
I am on Aubagio, that has a special warning on liver failure, so if you have any problems related to liver, Aubagio is defenitely not an option.
Take care of you and remember that here, on this community you'll always receive proper advice from our personal experience with MS. Every single patient is unique when referring to symthoms and to response of treatment as well. So you are unique too and you'll soon have your own successful story to share with all of us!
Take care of you and remember that here, on this community you'll always receive proper advice from our personal experience with MS. Every single patient is unique when referring to symthoms and to response of treatment as well. So you are unique too and you'll soon have your own successful story to share with all of us!
Unfortunately, I have firsthand awareness of Gilenya’s cardiovascular side effects. With your family history, no need for you to try that drug at this point. However, I wasn’t aware that Tecfidera and Aubagio had such effects.
If Avonex has lowered my WBC count, I’m not aware of it, and I know that’s been tested. I have faced the flu-like side effects, especially early in therapy, but those have proven manageable over time. Of course, your results might vary. And don't get me wrong, I'm certainly tired of the weekly shot and its side effects, however minimal they are, but it's by far a lesser evil than progression and relapses.
If Avonex has lowered my WBC count, I’m not aware of it, and I know that’s been tested. I have faced the flu-like side effects, especially early in therapy, but those have proven manageable over time. Of course, your results might vary. And don't get me wrong, I'm certainly tired of the weekly shot and its side effects, however minimal they are, but it's by far a lesser evil than progression and relapses.
The thing I am concerned with is that the oral medications haven't been around for very long and some have cardiovascular side effects, not comfortable with that. I have a family hx of suden cardiac death, mother died at 45. I would like to get back into my primary function as a nurse and I understand that the disease won't lower my resistance but certain treatments may. As far as medication without dangers of cardiac side effects it looks like interferons are the best choice
Hi Beth . Let me add my own welcome to the club no one wants to belong to. Take time and figure out which drug you think you might want to try - and do the research. You have been given some good resrouces to check as a starting point.
The interferons can lower WBC, Copaxone does not lower the WBC. One piece of confusion many people have is thinking that MS lowers our resistance, when in fact it does the opposite. The damage to our myelin occurs because of an overactive immune system.
Be smart and take the time to understand all of your treatment options and stick around and ask your quesitons.
-Laura
The interferons can lower WBC, Copaxone does not lower the WBC. One piece of confusion many people have is thinking that MS lowers our resistance, when in fact it does the opposite. The damage to our myelin occurs because of an overactive immune system.
Be smart and take the time to understand all of your treatment options and stick around and ask your quesitons.
-Laura
Thank you for the responses. I was wondering if the interferons or copoxone lower white blood cell count or ability to fight infections?
You have so many more tools to fight this disease than when I was first diagnosed almost 10 years ago. Those include the DMTs (aka DMDs), and I’m glad you’re willing to take up arms in this battle. Many of us hold our ground pretty well.
Choosing a DMT doesn’t have to be “a daunting task.” Don’t feel any pressure, because you really can’t make a wrong choice. Yes, you may choose a DMT that ultimately proves wrong for you, but there is usually no way of knowing that until you’ve used it for a while. So it’s still not a wrong choice. All of the DMTs have success stories. All have failure stories, and like all bad news, those get a disproportionate amount of the attention.
It’s important to maintain your dosing regimen. If you have had a hard time remembering to take pills in the past, that’s a strike against an oral DMT. You also may find the oral DMTs, although approved by the FDA, haven’t been in the real world long enough to establish a reliable track record. But how well can you handle a weekly intramuscular shot, or subcutaneous shots even more often? What kind of support team of family/friends do you have that can help with shots if needed?
They all have side effects that vary from one person to another. Which side effects are you best equipped to handle?
A neutral synopsis of all the DMTs is here: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
And if you and your doctor(s) see evidence that the DMT doesn’t work, or if you find its side effects intolerable, you can switch. There really is no obligation!
Ask questions anytime!
Choosing a DMT doesn’t have to be “a daunting task.” Don’t feel any pressure, because you really can’t make a wrong choice. Yes, you may choose a DMT that ultimately proves wrong for you, but there is usually no way of knowing that until you’ve used it for a while. So it’s still not a wrong choice. All of the DMTs have success stories. All have failure stories, and like all bad news, those get a disproportionate amount of the attention.
It’s important to maintain your dosing regimen. If you have had a hard time remembering to take pills in the past, that’s a strike against an oral DMT. You also may find the oral DMTs, although approved by the FDA, haven’t been in the real world long enough to establish a reliable track record. But how well can you handle a weekly intramuscular shot, or subcutaneous shots even more often? What kind of support team of family/friends do you have that can help with shots if needed?
They all have side effects that vary from one person to another. Which side effects are you best equipped to handle?
A neutral synopsis of all the DMTs is here: http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
And if you and your doctor(s) see evidence that the DMT doesn’t work, or if you find its side effects intolerable, you can switch. There really is no obligation!
Ask questions anytime!
Very sorry for your dx. It's not easy to get this news, but thankfully there are a number of treatments available that will help to improve long term outcomes for our generation and the ones to follow.
The MS Society has published a great resource, which is current, to help guide the decision you're facing.
http://www.nationalmssociety.org/download.aspx?id=45
Perhaps have a read and then follow up with any questions you have regarding first hand experiences of particular drugs.
The MS Society has published a great resource, which is current, to help guide the decision you're facing.
http://www.nationalmssociety.org/download.aspx?id=45
Perhaps have a read and then follow up with any questions you have regarding first hand experiences of particular drugs.
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I was on copaxone for 3 years, with no problems . The chest pains reported with post-injection reaction is something they don't connect with heart damage. You can talk to your doctor about that one for a further explanation - but you need to be aware of it should it happen to you. It passes in a few minutes but can be frightening.
Gilenya is definitely off my list because of the cardiac concerns but I don't know of any problems with the other orals, Aubagio and Tecfidera. I am on Tysabri and have no knowledge of cardiac worries for that one, either.
Good luck with this decision - I know it is daunting because we wan to make the right choice but remember if the first one doesn't work for you, there is nothing that stops you from switching to a different drug. ~Laura