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  • Posted by Lisa on April 8, 2022 at 11:37 pm

    I was strongly chastised by the neurologist yesterday for using the word “remission” when referring to a period of time in which I had little to no active symptoms.  She told me I was the 2nd patient to use that word this week and told me to never use that word again when referring to MG because there is no such thing.  She told me “remission means cured, and there is no cure for MG”.  I was kind of taken aback.  I was under the impression that when I’m doing ok and not needing meds, that was considered “remission”.  I would like input from other patients on using this word.

    Richard Marquard replied 10 months, 1 week ago 20 Members · 24 Replies
  • 24 Replies
  • BioNews Staff

    Member
    April 9, 2022 at 8:27 pm

    Hi Lisa! I’m Michelle and one of the moderators of the forum.

    I’m really surprised your neurologist said that. My neurologist told me I was in remission when I had been pretty much symptom-free and medication-free for a few months (I can’t remember the exact amount). I didn’t even know remission existed for people with MG until she told me.

    In my opinion, cured and remission don’t mean the same thing. I don’t believe that I’m cured, but to me, remission fits my current state of no meds and little to no symptoms.

    I hope you’re doing well!

     

    • Lisa

      Member
      April 10, 2022 at 12:45 am

      Hi Michelle, it’s nice to meet you!  I was surprised she said that too.  And she was very adamant about it.  I agree with your definition of remission and I’m confused at how she, as a trained medical professional, could argue against the actual medical definition of remission – which says remission is “the reduction or disappearance of the signs and symptoms of a disease”.

    • Robert Davidson

      Member
      April 15, 2022 at 7:56 pm

      Hi Elisa,  my Neurologist, who specializes in MG and other neuro diseases, used the term “Remission” with me even with some remaining neck weakness.  I’ve never heard anyone use remission as a synonym for “cured.”  I Googled “What is the medical definition of Remission?”  Here’s the answer –  “<b>A decrease in or disappearance of signs and symptoms of cancer</b>. In partial remission, some, but not all, signs and symptoms of cancer have disappeared. In complete remission, all signs and symptoms of cancer have disappeared, although cancer still may be in the body.”

      So, just like MG is incurable doesn’t mean you have symptoms.  Your neurologist sounds like they have a medical degree but not an English degree.

       

    • Robert Devine

      Member
      April 27, 2022 at 10:28 pm

      Makes me wonder what else your neurologist doesn’t know ask her/him to look up the definition of remission and remind her you did not say cured.

  • isy

    Member
    April 13, 2022 at 4:11 pm

    I have been in remission for about 4 years. I have Musk Positive MG and have had infusions of Rituxan when my numbers go up. So far, so good.
    I am having my next blood test next month & my great neurologist stays right on top of the results. If there is any increase in the numbers, we do a repeat test & if necessary, start the infusions.

  • BARBARA f BARNES

    Member
    April 13, 2022 at 9:07 pm

    You are right, remission means the absence of active disease but cure means totally eradicated disease. As a ONC certified RN I was always uncomfortable when pts in remission thought they were cured. I am shocked at your physicians reaction. Best wishes for a long remission.

  • CathyF

    Member
    April 14, 2022 at 1:00 pm

    Surprised.  Remission means symptom free with remarkably less intervention.  Remission is a welcomed respite.  There is no cure for mg.

  • Jonathan A

    Member
    April 14, 2022 at 2:20 pm

    No one has ever told me what all the “D” symptoms of MYASTHENIA GRAVIS   meant in ENGLISH either,  I just have to keep GOOGLING to see what DIPLOPIA, DYSARTHRIA, DYSPHAGIA, DYSPNEA, etc mean in ENGLISH.  No doctor or nurse talks to me about meds, test results. or REMISSION.  They seem to be too busy.   HIGH VOLUME   …   REPEAT BUSINESS  … refer me to SOMEONE ELSE   attitude.  So I don’t know what REMISSION is.  I only know what I feel like NOW.

    Thanks to Michelle’s link yesterday to MDA.org, I know know what those words mean.  ALLSTRIPES RARE DISEASES has been great about getting my medical TESTS, CONSULTS, and HOSPITAL MEDS given, dates, and doctors passing thru,  reports for me  … Now I am trying to translate MEDSPEAK   “words and abbreviations”  TRUS… FOLEY… ILIEUS  … TRACH  … dangerous TOBRAMYCIN  ….   into Layman English.   I was sedated for a month, and only know  what could have been happening, a year later.

    So I believe I am in REMISSION for 15 months now.  No one told me.  I am just feeling much better now, compared to other MG patients in my four MG SUPPORT Groups.  I have had only the original 5 hours of 5 days of IVIG,  I have been tapered off PREDNISONE for a year now … so my medically induced DIABETES II is in remission since Halloween and no more LANTUS shots.

    I am still taking all my 11 meds … 5500 MGs per day, RELIGIOUSLY, and my only symptom is still ACUTE ONSET INSOMNIA  … and needing to rest from MG pooping out and only 3 or 4 hours of sleep a night.      So to me, judging from WHERE I WAS  (5 months in 5 hospitals in 2020) … and WHERE OTHER MG SUPPORT PEOPLE ARE  in their journey,   …. I consider myself in REMISSION.    But I am playing it SAFE still, and not ever going out of town ever  …. where would I find an MG SAVY NEUROLOGIST  in another city????

    It took me 8 months to be diagnosed   … and it was by one very smart NURSE  … not a doctor.

    SO SAY WHAT YOU WANT  … but no “doctor ???” can tell me that I am not in REMISSION.

  • Sharon Haw

    Member
    April 15, 2022 at 3:01 pm

    My neurologist said there is no cure but remission is possible – he used the word remission Since he is part of 3 clinics, including the neuromuscular clinic at our local teaching and research university where I see him,  I assume he’s current on terminology. I’ve been stable for almost 3 years now and the plan is to reduce then eliminate immune suppressant medication this summer to see if I have gone into remission. He initially said to wait for 2 years of stability (relatively symptom free) but extended it a year. I paused medication for the 2nd to 4th Covid shots for two weeks each time and felt great, and I’m looking forward to this summer to see if I am in remission.

  • Barbara E.

    Member
    April 15, 2022 at 9:39 pm

    Years ago, I was surprised to learn that my MG symptoms were gone and no medication was needed. At that time, the neurologist said there was no way to know if it would last a couple months or for the rest of my life. Still, my MG history would affect certain medical decisions/options, such as I can’t be an organ donor (disappointed) or use Botox (which I never wanted anyway). I initially said that I was asymptomatic, but several doctors told me that I was in remission. So, I switched to saying MG in remission. But, its no surprise that some doctors don’t agree to the terminology. My remission lasted for almost 10 years before my MG symptoms returned. I hope yours will be gone forever! Enjoy it and dance!

  • Tom A

    Member
    April 15, 2022 at 9:41 pm

    You are right, your neurologist is mistaken. How do I know? I am currently in remission! a diminution of the seriousness or intensity of disease or pain; a temporary recovery. Of course, I realize I am not cured — just in “remission!”

    • Stanley Schildkraut

      Member
      April 20, 2022 at 1:25 pm

      Thank you Mervin, I visited  a new neurologist who’s  opinion is he’s  the Great and Powerful Wizard.

      I’m scheduled for an EMG and a new Single Fiber Optic test at Columbia Presbyterian. The Wizard is so far leaving an unflushed Shiley Port in my chest. I’m in remission,  Plasmapheresis  worked wonders, my current  state of remission is waning, the Plasmapheresis has been stopped. I feel  lousy. But the Great and powerful knows all.  Thank you for your  explanation of remission. Your last lines speak loud and strong

      Thank you.                               Stanley Schildkraut

       

       

       

       

  • Stanley Schildkraut

    Member
    April 20, 2022 at 11:41 am

    I was writing about my experiences in the last 3 weeks.
    Why the moderation?

  • Scott White

    Member
    April 21, 2022 at 4:31 am

    Lisa, I too am currently in remission, the two most common are medical remission, not medicated remission, you might what the difference is with those two definitions, well medical it through surgery and other physical treatments, I.E. PLEX (Plasmapheresis) and Thymectomy or even IVIG, Medicated is through medicine, Cellcept, Prednisone etc…. I have been in remission since Dec 2020, also the definition of remission is as follows : a diminution of the seriousness or intensity of disease or pain; a temporary recovery. “ten out of twenty patients remained in remission

    Congrats on your journey with remission, I hope all whom experience this enjoy it for a very long time and those whom have not, get too – Stay in remission my MG Sister!!!

  • Scott White

    Member
    April 23, 2022 at 1:43 am

    Lisa, I too am currently in remission, the two most common are medical remission, and medicated remission, you might what the difference is with those two definitions, well medical it through surgery and other physical treatments, I.E. PLEX (Plasmapheresis) and Thymectomy or even IVIG, Medicated is through medicine, Cellcept, Prednisone etc…. I have been in remission since Dec 2020, also the definition of remission is as follows : a diminution of the seriousness or intensity of disease or pain; a temporary recovery. “ten out of twenty patients remained in remission

    Congrats on your journey with remission, I hope all whom experience this enjoy it for a very long time and those whom have not, get too – I hope remission lasts for you and everyone else for a very long time !

  • Pat

    Member
    September 14, 2022 at 12:50 am

    Lisa I was diagnosed with very mild MG symptoms in 2013 prescribed mestinon and my symptoms went away almost immediately to the point that I no longer needed to take that medication. Same mild symptoms recurred in 2019 with the same results. May of this year my symptoms I started to experience speech and swallowing problems that I had never experienced. These rapidly became more severe leading to my first crisis. I have used the term remission with all three neurologist I have seen and none of them have balked at that term.

  • EDWARD CLAGHORN

    Member
    September 14, 2022 at 7:38 pm

    My Dr. has always talked about patients who went into remission. My case has seem a slow steady decline in health as well as declining results from IVIG. I will switch to vyvgart in October and hope for improved results as well as remission.

    Dreaming is free

  • Bobbi

    Member
    September 14, 2022 at 7:46 pm

    I would like to follow this conversation . Being seronegative , after six years of being diagnosed . Because I am in remission , my neurologist feels that she made the wrong diagnosis .
    Because according to her , there is no such thing as remission . So I don’t have MG .

  • Robert Ballentine

    Member
    September 14, 2022 at 8:22 pm

    My neurologist, who heads-up an MG clinic that is well known and highly respected, tells me that I’m in “clinical remission”, minor symptoms for several years.

  • Mark Nafe

    Member
    September 14, 2022 at 8:56 pm

    It’s a tough disease – I was diagnosed about 5 years ago and I struggled to wean myself from drugs and was successful.  Some light symptoms and some days better.

    but your immune system does not sleep.  So although your b and y cells are not active today something may trigger them. For me it was a cold a few months ago and for sure I thought it was covid.  Went to the ER and everything but it was just a cold.  You see the cold kicked off an immune response and the MG B and T cells decided it was a good time to go to work. My doctors said to go back on the pills and possibly an IVIG session.

    So remission is an ok phrase – similar to cancer.  You have no symptoms but it may come back.

  • Tom A

    Member
    September 14, 2022 at 10:51 pm

    Here is a definition of remission: a diminution of the seriousness or intensity of disease or pain; a temporary recovery.
    “ten out of twenty patients remained in remission”
    You are in remission.

  • Sharon Haw

    Member
    September 16, 2022 at 4:23 pm

    After 3 years, last week my neurologist reduced Cellcept (Mycophenylate Mofetil) to 2  from 4 (500 mg) pills daily  to see if I am in remission. He said the current thinking is that MG doesn’t go into true remission and that the symptoms are lurking in the background at levels that aren’t noticeable to the patient and could easily be triggered. He cautioned me to monitor for symptoms closely and contact him at the first sign as it may not be so easy to bring me back to my current state by simply increasing Cellcept. I may need aggressive treatment to reverse the escalation of symptoms similar to the first six months after initial diagnosis (Cellcept and prednisone). That said, he has 2 patients that have been off medication for 20 and 30 years respectively, and several others for less time than that, so he felt it was worth a trial based on 3 years symptom-free and the 3 brief times this year that I reduced or stopped taking Cellcept to improve immune response for my last two Covid boosters, and while I had Covid and was on Paxlovid (antiviral pills) for 5 days.

  • Lester Shaw

    Member
    September 16, 2022 at 8:13 pm

    Remission can be temporary and is used by my Dr at Yale hospital.

    your MG may come back, but enjoy your remission as long as you can!

  • Richard Marquard

    Member
    August 9, 2023 at 4:03 pm

    We Are All the Same , Yet All Different

    I am in remission. I know I have mg and that it is incurable. We should not get hung up on differences in doc’s words.

    I am in remission because I had been reducing my mestinon drug and have now stopped. I have been reducing my prednisone and now down to 12.5 mg daily. Continuing to reduce.

    I still sleep 9 hours average at night ( used to be 10)

    I still need naps but now 2 hours daily vs 3-4.

    I still have weak muscles but do physical therapy and charts say getting stronger. ( cupping helps)

    My eyes no longer burn but act like dry eye and not every day.

    Have fatigue but less( acupuncture monthly and continuing to monitor thyroid thru regular blood tests)

    I still am cognitive of anxiety high emotions and stress , but, no flare-ups as of late and am in better control.

    My mind is determined to continue the above path until I have this “new normal” that I can find acceptable for the rest of my life.

    I get it that there is no cure and that flair ups are always possible. But i also know that once we start remission and believe it,by any definition, our mind becomes more on our side and we have more to look forward to than we perhaps could not have imagined otherwise.

    Many forums here talk about self advocacy. Others talk about the right support team from docs to friends. The more I read the more I learn then take what I believe into practice. I AM in remission ! We all can do this! Don’t give in. We ARE all the same.

    Prayers and hope to all

     

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