Denial

[Saramascara84]

Hello everyone. My name is Sara and I received a DX around late January early February, I can't really remember. I was miss diagnosed a couple of times. First it was possible MS, then it was MS, then NMO (I received Rituxan), then MS again when a new neuro had suspicions about my symptoms. So countless MRI's and another painful spinal tap later, here I am with a positive MS rx. Now, I am in complete denial. I don't believe I have MS. I told the neuro and he showed me my brain, riddled with lesions and my spinal cord was lit up like a Christmas tree. I just feel like something is not right. I mean, I feel sick, a lot lately. Pain and tingly, restless appendages, extreme depression, fatigue, slurred speech, walking slow, girdle sensation, L'Hermitte's sign... Yeah... I know... but why am I in denial? I'll be starting Copaxone soon, I just feel like it is an over exaggeration. I don't know. I'm not sure how anyone else would respond to this... Maybe some insight? Idk. Thanks and take care everyone.

[Thinkimjob]

Ah, that river in Egypt. It's nice there.

There are many stages of grief. Denial is close to the top. It's like a twelve step program. Eventually you work your way through.

Don't be too hard on yourself. I've had MS for 18 years, and I still try to carry on as though everything is 'normal'. I know no other normal, so what else can you do?

You have MS. It sucks. Plus side, better drugs these days, and with any luck even better to come.

[Myoak]

Hi Sara,
Thank you for posting. Welcome to the site. Although we all hate the circumstances which brought you here we are thankful for you.

I think many respond similar to the way you have; frustration and disappointment can be so deep. First you feel like crap then you get confirmation of why and it all presents a huge challenge. The way forward isn’t clear just now. You wonder how will this affect my life, my family, job, etc?

It takes time to adjust to the diagnosis. Why denial? I think because we hate it so much. Just don’t want it or any part of it.

You said you would be starting copaxone soon so evidently you have had conversations about DMT (Disease Modifying Therapies). The reason DMTs are important is that they slow down MS. Some of the MS meds are better than others at doing this.

Neurologists like to explain that our brains have “reserve capacity”. When damage occurs in MS our brains figure a “workaround” using reserve capacity to restore functions. One goal of DMTs is to preserve that reserve capacity.
Relapsing Remitting MS (RRMS) will occasionally flare-up then remit, obviously.

If or when reserve capacity gets exhausted RRMS can progress to SPMS (Secondary Progressive MS). Therefore, doctors are intent on treatment which will preserve the reserve.

A plan for wellness should include all the things we know and have been taught… proper rest, diet, exercise, and stress reduction. Smoking makes MS worse. Often MSers are seriously deficient in vitamin D and require substantial supplementation of 5,000 IU per day. Most MS doctors routinely check vitamin D levels (a simple blood test) because it is a frequent problem with MSers.

Which MS medicine to take is a big consideration. You mentioned Copaxone. There are 10 FDA approved meds for MS. Each one is unique in effectiveness and side effects.

One of the very, very interesting things about you is that you have been on Rituxan (rituximab). IMO, move heaven and earth to get back on this med. It is not one of the 10 FDA approved DMTs for MS but is, IMO, the best med available for treating MS.

Why? Because Phase 1 and Phase 2 trials demonstrated effectiveness on par with the most effective MS medicine available which is Tysabri. Unfortunately, Tysabri also carries risk of a disease called PML. Most taking Tysabri will never develop PML but those who do suffer greatly.

Both Tysabri and Rituxan are monoclonal antibodies which are thought to inhibit infected B lymphocytes from trafficking into the brain. Tysabri blocks them from crossing the blood brain barrier. Rituxan kills them.

With Tysabri B-cells continue to circulate and when Tysabri is discontinued these B-cells are thought to flood the brain and exacerbate MS greatly. Techniques to handle that are being developed but so far are less than optimal, to say the least.

Rituxan, on the other hand, is just as effective as Tysabri treating MS but the problem with B-cells flooding back may be avoided because Rituxan selectively kills B-cells. I say selectively because Rituxan does not appear to kill plasma or stem cell b-cells which are very important for health.
Learn more about Rituxan at: http://neuroimmunology.wordpress.com...ple-sclerosis/

Sara, the best chance you will have the most normal life possible is to get on a highly effective MS med early in your treatment. The old days of waiting, going slow, using older meds which don’t work very well has proven unwise. Treat early and treat aggressively to secure the best outcome for a longer and happier life with better health, IMO.

It is just remarkable that you already have exposure to a remarkably effective medicine. I can only hope you will persist in finding a way to take Rituxan again. It is perfectly legal, it is not off-label for your doctor to prescribe Rituxan for NMO. That might be the way forward if one of your doctors won’t prescribe it for MS.

More and more MSers are taking Rituxan. I believe that fact is reflected by the message boards here at MSWorld.

Lastly, on page 364 of Berger’s Handbook of Clinical Neurology 2014, Rituximab (Rituxan) risk of PML is 1 in 30,000. Tysabri has much higher risk of PML, varying according to certain factors.

Sorry about the length of this, Sara. But the most important step on a new journey is a step in the right direction.

I am not a doctor; I know little about you so keep in mind that I am offering my opinion only. And of course, my best wishes for your greatest success. Endure the hard times, Sara, joy comes in the morning. There will be times of refreshing and great happiness ahead. We love you and are pulling for you, Sara.

[mac1ntosh]

I can relate!

Hi, welcome to the river... It's nice here...

I can relate to your feelings, I've been diagnosed since 2005, started Betaseron, and am STILL feeling like this is a dream.

A dream where I am disabled, trying to get disability, trying to work part time, and living with MS. (Is that a nightmare?)

I'm in counseling, taking an anti-depressant, and slowly coping with the grief of losing so much to MS. All I can advise is to seek help, help with coping, help with this new reality.

Keep your chin up, we're here to help.

[Cat Mom]

Hi Sara and welcome! So sorry you're stuck with MS. I've been on Copaxone since Aug/07 and the last steroid-worthy relapse I had was Jan 2009! I hope it's good to you as well, if not, there's so many new choices.

Wishing you luck in finding that which works well. In the meantime, please check in with us and let us know how you're doing.
Jen

[J-Bo]

Sara, it makes perfect sense to be in denial. I happen to believe that it's a very effective coping strategy at times. If I didn't have denial to fall back on when I think about the future, I don't think I could go on.

But I'm not sure if that's what you mean. Are you saying that you genuinely believe that your diagnosis is incorrect? If that's it, I'm not sure what to say. If you really think they're wrong because they've been wrong in the past, maybe you should go with your gut and keep looking for better answers. I know that I've been told a whole bunch of things by doctors that turned out to be very, very wrong. But still, I wouldn't let that delay treatment if it were me.

[poppydarling]

With Tysabri B-cells continue to circulate and when Tysabri is discontinued these B-cells are thought to flood the brain and exacerbate MS greatly. Techniques to handle that are being developed but so far are less than optimal, to say the least.

Rituxan, on the other hand, is just as effective as Tysabri treating MS but the problem with B-cells flooding back may be avoided because Rituxan selectively kills B-cells.

Myoak, excellent post. I'm careful not to wade into deep medical waters as I'm unqualified but I was qualified enough to call the FDA and report my reaction to coming off Tysabri cold turkey, which sent me into SPMS within 4 months. Four years later and I still haven't recovered, and I'm unlikely to ever do so. Now on Rituxan every 8 weeks, which seems to be keeping me (somewhat) stable.

I think people who are newly diagnosed should hit the ground running as soon as the doctor is fairly certain of the diagnosis. You don't need a drug with 33% effectiveness rate when you don't know how long you've already had MS, and don't know exactly where you are in the disease process.

When I was first diagnosed, it's likely that I had had the disease for decades, and I was in denial for a few years because it seemed benign to everyone, including me. I think that "drug free time of denial" definitely set me back in terms of damage, but it also allowed me time to process everything and live without fear, so I'm also grateful, in a way. We all walk the road differently, and that's okay.

[Thinkimjob]

Evening all.
It is a difficult choice, because MS is usually a nasty, slow-moving disease.

Do you take the new wonder drug that might kill you, or completely stuff you up? Or do you take the not-so-wonderful drug which is not so wonderful?

I don't know.

[frosty123]

Such great information.

Thank you!

I am struggling with a couple of similar issues. I was diagnosed 7 weeks ago, have not started the prescribed tec. Drug, waiting on insurance I suppose.

My initial symptoms, very bad fatigue, funky brain and wonky right leg are seeming to abate. I am enormously grateful. I am 56 yr old, working part time (now).

I would put my progress at about 60 to 70 %,depending on my day.

I am not too thrilled with my neuro office, like the doc but awful office management. Can't get a return call, isn't getting paperwork to drug company....etc.

My question, will waiting til November be detrimental to my MS,

I have an appt scheduled with Rush MS clinic late in November and will transfer my care at that time.

I cannot tell you how much help this board has been to me in terms of making informed, educated decisions.

My heartfelt thanks.

[Myoak]

Poppydarling’s post is important, IMO. So much in MS happens sub-clinically. If damage is occurring sub-clinically, unknown to us, and surfaces when it has accumulated to the point where our brains can no longer develop a path around it then slowing sub-clinical damage should be a supreme priority.

Slowing damage may add a decade, even two or three decades, of far better health than not treating early and aggressively.

Aggressive, to me, should incorporate both medicine and wellness techniques. MSers just have to be more serious about avoiding smoking, getting proper rest, reducing stress, eating well, etc. than people who have no health problems.

No one is perfect. No one can possibly do everything. But we can do several small things and have much better health than not doing them.

Frosty, it is great that your symptoms seem to be abating. And it is great that you will be going to a MS Center in November. Don’t worry too much about delays with your current doctor. Who knows but that it could work to your advantage if the MS Center recommends a different direction?

I know November can’t come quickly enough but you are using the time wisely by educating yourself. We all make better decisions as we learn more. Often when I am unsure of exactly what to do I just wait. Usually, one option will rise above the others in a span of a few weeks.

Treating aggressively doesn’t mean I have to jump immediately, before through consideration. I believe through consideration is a part of aggressive treatment.
Best to you Frosty.

Poppydarling, may I ask how long you have been on Rituxan? I am so glad you seem stable. Trials for re-myelination are ongoing. Hang in there.

[frosty123]

Many thanks

I agree. I am making all efforts to reduce stress and rest more. I am most fortunate to have been able to reconfigure my job. There is a certain freedom to putting ones own needs first.

But honestly, I think that is a MUST or pay the piper (which I will most certainly do for the right party)

[aspen]

I

Sara, I feel for you. Our situations are a little different since I have yet to be dxed or treated for anything, but along the way I have heard from medical professionals migraine, ms, complicated migraine, couldn't be anything but ms, vasculsr, in your head (from a cardiologist no less!), not likely ms, possibly NMO, ALS (ruled out), now back to ms or NMO.

Somewhere along the way, I stopped hearing the words at a personal level. It was protective. Each time something was suggested or re-suggested, I have been mentally filing it under "yeah... Maybe".

About two months ago it did occur to me that at some point in the future, if one of (hopefully two) of my specialists actually dx me with something ... Well, I'm pretty sure I won't believe them. History is a strong teacher.

And "proof" has been wrong before. (Not proof for dx, but strong suggestive clinical, neuro exam and imaging). Example. ..18 months ago I had an MRI that "met McDonald criteria (2010) for ms". Apparently that was incorrect. So Who is to say that any future pronouncement will be correct?

I really, really identify with what you are experiencing. And IMO it's not just denial of a new dx but protective denial birthed and refined through the dx process. I know I'm there already. I do see a counsellor thankfully, and I strongly suggest one for you if you don't already.

Thinking of you as you continue to process your diagnosis, plus the journey to this point and the one that follows .

Hello everyone. My name is Sara and I received a DX around late January early February, I can't really remember. I was miss diagnosed a couple of times. First it was possible MS, then it was MS, then NMO (I received Rituxan), then MS again when a new neuro had suspicions about my symptoms. So countless MRI's and another painful spinal tap later, here I am with a positive MS rx. Now, I am in complete denial. I don't believe I have MS. I told the neuro and he showed me my brain, riddled with lesions and my spinal cord was lit up like a Christmas tree. I just feel like something is not right. I mean, I feel sick, a lot lately. Pain and tingly, restless appendages, extreme depression, fatigue, slurred speech, walking slow, girdle sensation, L'Hermitte's sign... Yeah... I know... but why am I in denial? I'll be starting Copaxone soon, I just feel like it is an over exaggeration. I don't know. I'm not sure how anyone else would respond to this... Maybe some insight? Idk. Thanks and take care everyone.

[Jules A]

So while I know there are "reported benefits" to denial, personally I'm not a fan. Perhaps its the control freak part of me but I need to know and be able to sort through all the possibilities and attempt to accept them before I'm hit with acute changes that require immediate cognizant decisions.

Denial robs us of valuable time to plan and prepare, in my opinion.

One of the things I find so difficult to deal with regarding MS is that I will never know if Copaxone has helped me for the last decade or if my initial course of MS has just been blessedly light, knock wood. That is one reason I decided not to switch to the 40mg injections. If my MS started tanking I would never know for sure if it was secondary to being on a lesser amount of Copaxone or just my time for MS to amp up. I don't want to deal with second guessing my decisions especially when for me it was only about missing an injection or two each week.

What I do know is that MS can change dramatically at any minute so I keep my guard up and continue to plan for the worst while hoping for the best.

[pennstater]

So sorry to hear of your MS diagnosis struggles. I know my neuro sent me for a second opinion to reinforce the diagnosis, but not sure that works for you given your experiences. What a rough road.

My neuro also recommended a therapist to help me cope with the fear, anger, denial, etc...He told me that it rakes most people about 2 years to fully accept and move thru various stages of grief. That was about right for me. Of course, still revisit different stages based on what happens, but I deal much better.

Good luck to you. I hope you find a neuro you can have full confidence in, but always be your own best advocate.

[Saramascara84]

Thank you!

Oh my goodness. Thank for everyone's thoughtfulness and amazing knowledge on the disease. My memory is laughable but that long reply was amazing and insightful. I guess most of the denial comes from thinking, well my symptoms aren't as severe as others, I haven't gone blind, ugh... idk... Anyway, yes, I received one Rituxan infusion the side effects were killer... I'm all over the place.

I think a lot of the "there is nothing wrong with me" stuff comes from the lack of support from a very important person in my life... my younger sister(24, I'm 30) who laughs at me when I lose my balance, or rolls her eyes when I drop things or say that I'm not feeling that great and keeps telling me that the doctors are wrong and to get another opinion (I've had 3).

On the other hand my boyfriend of almost 4 years and my youngest sister (21) care and always support me. Both my parents are deceased so I don't have much back up. Ramble, ramble. Thanks again for taking the time to sympathize and offer advice and information on MS. Hugs to you all.I wish all of you good luck and "feel goods". And although you all don't know me and I don't know you all, In here to talk. idc to give my number because everyone is my friend. Texts are great because I work from 8:30 to 5 (law firms) everyday except on weekends. Warm hugs. -SARA

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. Personal information removed per guidelines, also.**