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    • #18813
      Lisa
      Participant

      I had my 3rd appointment with my “assigned” neurologist/neuro-specialist today and I came away with frustrations and not the greatest gut feeling about the thoroughness of my health “care”.  I have dealt with MG symptoms for at least the past 15 years, if not longer – misdiagnosed with MS after testing for everything under the sun EXCEPT Myasthenia Gravis and then when my symptoms improved, my doctors at that time just shrugged their shoulders and forgot about me.  Over the past few years, my symptoms would randomly appear and then go away, but I continued to go to different cardiologists because I thought I was experiencing increasing heart palpitations (along with fatigue) – never mind the other symptoms of swallowing issues, weak neck, shortness of breath, double vision, etc.  When put on halter monitors, they all told me my heart was fine, but the “palpitations” seemed to get worse.  I finally found a cardiologist who did an echo and followed that with a CT scan where they found a very large thymoma.  I had a subtotal thymectomy with resection of the thymoma in January 2021, but when I would ask, after doing my own research, if I have MG, all my doctors said nonchalantly “probably not”.  I asked for them to run blood work (yes, I had to ask them!) and they ran AChR and MuSK which came back negative, so they told me I did not have myasthenia.  Finally, after symptoms continued following my thymectomy, I requested SFEMG be done to officially rule out MG and in January 2022 they confirmed I am “double-seronegative for gMG”. Ugh.  But at the moment of diagnosis, I had TONS of questions and was told by the neurologist she’d see me in a few months if I had questions.  If?!  She also said it was probably congenital since she considered my symptoms mild.  When I asked how to be sure, she gave me the option of doing a CMS genetic panel, which I agreed to wholeheartedly, but I was sent home with this life-changing diagnosis and no guidance or answers.

      Fast forward to today… my (limited) CMS panel came back negative and at my office visit with her today she flat out lied to me and said she never said she thought it was congenital and basically called me a liar for saying she said that.  My husband and daughter (who is in nursing) were both witnesses to this.  I feel like it’s super important to be able to trust your neurologist when you have something as life-impacting as MG, but how can I trust someone who isn’t truthful?

      I requested a more detailed CMS panel to check other MG genetic variants that are associated with another gene mutation that I have already been diagnosed with, but she refused and said it wouldn’t change how she treated my MG.  As a patient, don’t I have the right to know exactly what I have?  Especially for my family members that also have the same genetic mutation?  I happen to be someone who is a zebra among zebras – having been diagnosed with multiple rare disorders (I never know which rare disease t-shirt to wear on Rare Disease Awareness Day – ha!) and therefore I am that patient who often needs to be scrutinized a little more in-depth because I never present as a textbook case.  But every time I am in her office she reminds me that I’ll be lucky to get an appointment with her in 4 months because she is “so booked out”.  I feel like she just doesn’t want to take the time to figure me out.  Is it time for me to move on and look for another neurologist?  Or is this a common response among neurologists/neuro-specialists who deal with Myasthenia?

      She also said today that Mucinex and Benadryl are fine to take.  Everything I have read says they are contraindicated in MG.  I would love to hear from actual patients on this.  When I asked about getting put on a C-Pap for help with my shortness of breath and because twice in the past year my carbon dioxide levels have been too high, she told me that has nothing to do with MG and that I should have a sleep study done.  I am so very confused.  She seems to be contradicting everything I have read and I don’t want to take advice that could exacerbate my symptoms further.  I feel like I’ve already irritated my symptoms in the past decade+ with certain medications and anesthesia complications I’ve had during surgeries.  I don’t get the sense that she understands the scariness of not being able to swallow or breathe or having your legs buckle underneath you from weakness.  She’s a new/young doctor, so I’m not sure if it’s her inexperience, or just the type of doctor she is.  I do not know anyone else with MG, so I would greatly appreciate hearing from any of you.  I believe patients are the real experts!

      Thanks in advance – and sorry this was so long-winded.

       

    • #18815
      Michelle
      Participant

      Lisa,

      I can completely relate to what you are going through!

      Although I have only been diagnosed with MG for about 1.5 years, I have struggled with finding doctors who understand MG, much less understand the frustration that is causes the patient.

      My neurologist refused to order bloodwork to determine if I had MG. I had to request the tests from my primary care doctor!! She said that we couldn’t test for everything because we just don’t have that much blood!

      I had an MG crisis in January and went to the ER. They kept me waiting for 11 hours and kept ordering tests. They wouldn’t tell me why they wanted the tests and wouldn’t allow me to speak to a dr. It turned out that they could not reach a neurologist (at the hospital?) for all that time.

      My approach has been to learn as much as possible about MG and to try to get into many national clinics (Mayo, Cleveland, etc) and try to see as many neurologists in my state that I can. I spend the morning of most week days making phone calls and follow up phone calls.

      My persistence has paid off. At the ER, they took a chest x-ray which showed a mass in my chest. After seeing another neurologist, she sent me to pulmonary about the mass who sent me to our teaching hospital to see a neurology disease specialist. He believes that it is my thymus and know immediately the connection with MG and has sent me to follow up doctors for surgery and care.

      The frustrations are real and the resources to help us are very rare. My advise would be to keep trying doctors and clinics until you find that “angel” that has the knowledge and sympathy to give you the care that you need.

      I was diagnosed with sleep apnea and use a cpap. I have often wondered if the breathing issue is related to muscle weakness (MG) and breathing muscles. Do the sleep study! Anything that makes you better is worth it even if it isn’t directly connected to MG.

      In the meantime, know that you are not alone in this. This is a wonderful community where you can connect with others who are struggling. Keep the faith and keep fighting for the right doctors to take care of your health.

      My best to you,

      Michelle

       

      • #18823
        Lisa
        Participant

        Michelle,

        Thank you so much for your encouraging words!  We definitely need to be strong advocates for ourselves because no one else is going to do it.  I am glad someone is finally paying attention to your thoracic mass – thymoma can be dangerous and I am so grateful to the cardiologist who found mine!  I understand that everyone wants to be at one of the national clinics – I have reached out to Mayo recently, and will probably be pursuing that more actively from this point forward.  Currently I am at Vanderbilt, which gets a lot of name recognition, but as far as my experience here – I would not recommend Vanderbilt to any MG patients.  When you only get 30 minutes with your neuromuscular specialist every 4-6 months because they are “so busy”, and then they belittle you for reading information online to educate yourself about your condition because they aren’t educating you themselves – I just don’t consider that quality healthcare.

        I hope you are able to find your “angels” to care for you, as well!  I would love to hear of your experience going forward, especially if you are able to get into Mayo or Cleveland Clinic.

        All the best! – Lisa

      • #18824
        Mike
        Participant

        I recommend finding/joining a local MG support group and seeing if any members have recommendations for competent Neurologists in your area.

        • #18825
          Lisa
          Participant

          Hi Mike,

          Any advice on how to find a support group?  I actually asked the neurologist yesterday if she was aware of any support groups in the area (she told me she sees about 2 MG patients/day so clearly there are plenty of us in the area) – but she said no.  I’m not on Facebook or anything like that, so any ideas on how to locate a group would be greatly appreciated.

          Thank you, Lisa

        • #18854
          Andy Coyne
          Participant

          It’s interesting that we are separated by The Atlantic Ocean but we experience almost identical problems with the medical profession. If you find a good one stick to him/her like a leach!
          I would put money on your neuro NOTseeing 2-3 MG patients a day prevelance in the USA is around 0.014% that means in Nashville there are about 88 patients with MG! Even if it’s double it still doesn’t fit with her statistic! There will be other doctors also seeing MG!

      • #18834
        Robert B.
        Participant

        Hi Lisa,

        I’ve had gMG for 8 years & take Mestinon and receive four IVIG infusions every 28 days. My biggest issue is fatigue, but the infusions make life tolerable.

        You mentioned Mucinex and Benadryl. I take both daily, and have for the entire eight years, with no problems. They weren’t on the “do not use list” I’ve used since being diagnosed and neither of the two neurologists that I’ve seen have brought them up as problematic when reviewing my meds.

        As mentioned, I’ve had two different neurologists (had to change from the first one because of insurance), both of which are products of UT Southwestern in Dallas. While both are very knowledgeable, I’ve found there’s things they just don’t get about gMG. For example, I mentioned to each that I miss not being able to play golf. Both of them said “why can’t you play golf?”. I can’t do anything strenuous, so it blew me away that they didn’t get this.

        You take care and I hope things improve for you with your new doctor.

        Robert

        • #18844
          Lisa
          Participant

          Robert, yes!  Without living in our shoes, there often seems to be a lack of empathy with our struggles. 🙁 Thank you for sharing your experience with Mucinex and Benadryl.  I had read that they are contraindicated in MG, which is why I was surprised the neurologist told me they are fine.  But I’m glad to know another gMG patient has had success using them without any issues because this current crazy allergy season has me needing a bit of seasonal relief.

          With much appreciation, Lisa

      • #18835
        Sue
        Participant

        I also had thymoma. Myasthenia started  a year after thymoma removed. I ended up in ICU on ventilator. I started  having more sleep issues so had cpap  testing and now use it. I do think MG causes sleep issues.

        I live in rural area and drive 100 miles to see Dr. There are not many that specialize in MG so go with what they gave me.

        • #18845
          Lisa
          Participant

          Hi Sue, that sounds like a very scary episode that you’ve come through!  So glad your thymoma was found and removed though and also glad to hear of your experience with cpap.  I am going to pursue a sleep study.  And you are correct about there not being many MG specialists.  May there be better days ahead for all of us.

      • #18849
        Andy Coyne
        Participant

        Number 1 attribute is they LISTEN to you. I think a lot of neuro’s only hear what they want to hear! The average neuro will only see 4 cases of MG in their career and if you doctor is young she won’t have seen probably any and is therefore reliant on more experienced doctors or reading clinical papers. They are often divorced from the real world. If I was you I would try to get to a neurologist in a major teaching hospital that sees more than the average . My local hospital is a 1000 bed hospital and so far as I can tell there are only 3 MG patients on the books. What chance is there then for the doctors to gain experience. My particular issue is shortness of breath that gets worse during the day. I have to drive 120 miles each way now but I’m dealing with a professor who has a special interest in MG with breathing issues. Remember it’s your body you are entitled to know what’s going on and particularly what they are writing in your notes. Ask for a copy. Here in the UK you have access to your complete medical records but you have to ask!

        • #18852
          Lisa
          Participant

          Hi Andy,

          The phrase you used, “divorced from the real world”, really hit the nail on the head as far as what I’ve been dealing with.  I am at a well-known teaching hospital (Vanderbilt) and this current doctor I have is a Neuromuscular Specialist – yet I am still not comfortable in her ability to pay attention to important details.  (Like you, I often have shortness of breath and that has not seemed important to her – but for me, it is rather scary). I am now convinced, after hearing from so many people living with gMG, that I do need to look around and consider finding a new doctor.  First and foremost, one who LISTENS.  Thank you for sharing!

          All the best to you in your journey – Lisa

        • #18853
          Andy Coyne
          Participant

          It’s interesting that we are separated by The Atlantic Ocean but we experience almost identical problems with the medical profession. If you find a good one stick to him/her like a leach!

        • #18887
          Lisa
          Participant

          So true, Andy!

        • #18857
          Sue
          Participant

          I was referred to a pulmonologist. I had breathing tests, I ended up with COPD from the thymoma tumor. I use inhalers regularly and for over a year I used a nebulizer 4x day. My lungs have improved greatly. I know only get short of breath with exertion.

           

      • #18946
        Amy
        Participant

        Hi Lisa,  you are Seronegative, there are still many neurologists out there that still believe Seronegative MG doesn’t exist.   There are a fair number of us out there that are positive with other gold standard MG tests who I believe either. produce too small number of antibodies to be detected or a completely different antibody that they don’t test for.  Neurology as a field tends to draw from a certain personality type that are not always the easiest to work with.  Remember you are the consumer and you deserve to get the care you need and should feel like you trust your doctor. Amy

    • #18829
      Nan
      Participant

      Hi Lisa. I sent you a PM. There is at least one knowledgeable, seronegative-friendly neuromuscular doctor in Nashville. 🙂

    • #18831
      Amy Cessina
      Participant

      I have found when you go in with a long  list of issues they assume (falsely perhaps) that they aren’t all real. If you take the worst issues and focus the doctors on those, you might make more headway.
      On that giant list of drugs they give you most say “ use with caution” only a few are serious reactions . I’ve taken many on the list with no issues. But I do avoid the  antibiotics that are known to cause exacerbate.

      • #18862
        Jonathan A
        Participant

        Reply to Amy.   I have two very good DANGEROUS TO MG PATIENT MEDICATION LISTS. I always take them with me to ALL doctor appointments.  Also I carefully GOOGLE all of my medications,  so I know their SIDE EFFECTS.     I keep a copy of everything in my messenger bag, in case,  I am sedated or lose my speech/hearing again due to their mistakes.  I need my PAPERS and my MG MEDIC ALERT BRACELET  .. to SPEAK FOR ME!! , when I can not.  I have been in remission for a year now  … and want to stay that way.

        Most doctors that see me, do not know what MG is … or why I am on certain drugs.   They send me to Sonora Labs for blood tests, then don’t understand the results  …. when I show low red and white blood cells numbers.   I have had to remind two of my doctors that I am on CELLCEPT  2000 mgs daily  … irregular heartbeat and low blood counts are the side effects of what I need to suppress my immune system  …. just as Prednisone sent my sugar levels to the roof, when I never had any Diabetes.

        In reply to your thread,  ANTIBIOTICS can be VERY DANGEROUS,  especially TOBRAMYCIN.   I had total hearing loss for FOUR Months, in my first three hospitals of 2020, and my hearing is only about back up to 70%.  (so hearing church services on delayed  computer broadcasting gets better sound quality and comprehension)

        My doctor said that my learning loss was due to sedation and antibiotics.   Other nurses said it was due to antibiotics  .. was taking those three meds for that … after I contracted three types of Pneumonia in the ICU of the first hospital (I was still not diagnosed with MG yet).

        Another nurse at the next hospital said  .. that there are really over 200 medications that can cause temporary or permanent HEARING LOSS.  I googled my notebook,  and she was RIGHT about that 200 number.  So I was given pens and notepads at the second hospital and whiteboards with colored markers at the third hospital, and spent four months communicating that way in the hospitals.   About a week before I got out of the third hospital, I could hear a nurse, sometimes if she was six inches from my near side  bed rail, talking loudly,  …  once the three antibiotics were tapered and out of my body.

        Also beware … if you are forced to take any “blood thinner” pills.  If they want to do anything to your body……   or get “samples”, your neurologist will insist that you stop your “blood thinners” pills, for at least five days  … before anyone goes “exploring”.  Not all doctors pickup on what MG medications are for, and what they do to your weakened body  … as they can make your breathing WORSE, and make your body get INFECTED … when you are taking immunosuppressants, that makes my immune system TOAST  … and unable to protect me.  So you can easily have internal bleeding or get an infection.  I still have to wear long sleeves shirts or long pants, when out gardening, as I can scrap my self on roses or pruning branches and start bleeding.

      • #18888
        Lisa
        Participant

        Very good to know, Amy.  Thank you!

    • #18832
      BBernadette
      Participant

      Hi Lisa,

      My heart goes out to you after reading your story.  Some times it’s a long road to diagnosis and continues with getting appropriate treatment.  I was going to suggest the same thing that Mike did.  Research to see if there is a support group in your area.  It helps to hook up with a local group and meet members that have MG.  Perhaps you could “google” for support groups in your area.  I know that my support group in my state does have a website, so it shows up in searches.

      Also, make sure that your (new) neurologist is a neuromuscular specialist.  They should have a better understanding of current treatments for MG.  It is not a one size fits all disease, for sure.  I had symptoms for about 7 years before I was sent to Mayo for another evaluation.  My antibodies were negative at the time that my initial symptoms presented, so they didn’t investigate any further.  I am thankful that I was able to be reevaluated by doctors at Mayo clinic and started on a course of treatment.  But…it was a very long road.

      I hope that you’re able to find a neurologist that can partner with you to provide the best care possible.

       

       

      • #18889
        Lisa
        Participant

        Bernadette, thank you for your kind words and advice.  I would also love to be re-evaluated by Mayo.  In the meantime, I will keep looking for a neuromuscular specialist who is a better fit for me.  I appreciate the encouragement.  🙂

    • #18848
      Robert Davidson
      Participant

      It sounds like you have a generalist Neurologist, not a specialist.  You didn’t say where you are located but my suggestion is to find a Neurologist who specializes in MG and similar conditions.  All Neurologists know about MG, but very few are a specialist in it.  As an example of a specialist to seek out is Dr. Johnathan Katz in San Francisco.

      Here is what Sutter health shows as his profile.

      Jonathan Katz, MD

      1100 Van Ness Avenue Floor 6, San Francisco, CA 94109

      415 600 9604

      Dr. Katz studies amyotrophic lateral sclerosis (ALS), myasthenia gravis, neuromuscular diseases, pain management, peripheral neuropathy, poliomyelitis, radiculopathies, and spinal muscular atrophy. He leads clinical trials of pharmacotherapies to slow the progression of ALS; device trials; a study of the NeuRX Diaphragm Pacing System to support patients with diaphragm weakness; and observational studies of factors affecting disease progression.

      Dr. Katz and others at the Forbes Norris Center work with researchers at the University of California, San Diego, to study mutations in RNA binding proteins that cause neuronal dysfunction and death. Dr. Katz and colleagues at CPMC (California Pacific Medical Center in San Francisco) will collaborate with Cedars-Sinai Regenerative Medicine Institute on new stem cell and gene therapy techniques to treat ALS patients. He is President of the ALS Research Group—an international ALS research collaboration. He sits on the medical advisory board for the Myasthenia Gravis Association.

      When I was in CMPC hospital for nine weeks, several doctors said Dr, Katz has patients coming from all over the country for MG treatment.  He took me from critical to remission in 10 months. He was going to enter me in a clinical trial he was part of, but I showed good improvement.  Not that I’m saying to contact him, although you could, but I’m suggesting you seek someone with similar listed specialties in a University or large teaching hospital in your area.

      My PCP told me to always seek doctors affiliated with a major teaching hospital or a university hospital as they are vetted for acceptance and know about current clinical trials you could possibly be entered in.

      Also, Google is our friend.  Google Myasthenia Gravis specialists in (your City) or go to https://myasthenia.org for Physician Referral List – Myasthenia Gravis Foundation.

      Bob

       

       

       

       

      • #18851
        Lisa
        Participant

        Hi Bob,

        Surprisingly, this Neuro of mine is at Vanderbilt and is a Neuromuscular Specialist who says she sees at least 2 MG patients each day (her words).  She is “an assistant professor in the Neuromuscular Division and sees both neuromuscular patients as well as those that may require botulinum toxin injections”.  She also fussed at me for using the word “remission” in relation to a period of time when my MG symptoms appeared to go away/lighten up.  Weird, right?? But that’s for another discussion. From the feedback I’m getting from everyone, and my own gut instinct, it looks like it is time for me to search for another neuromuscular specialist – even if that means traveling further away from what’s available to me locally.  Finding the right doctor feels like such a “roll of the dice” and it’s definitely a source of stress right now, but thank you for your encouragement because hearing from other MG patients and knowing there actually are good doctors out there who are taking CARE of their patients gives me hope!

    • #18855
      Michelle Gonzaba
      Moderator

      If anyone is looking for a way to search for a neurologist who understands MG, I recommend trying to find an MDA center in or near your area (in the USA). You can use the link below to find one.

      MDA Care Center List

      Even if the Care Center doesn’t have one, they might be able to point you in the right direction. It can certainly help you narrow down your search as well. I hope this helps!

      • #18856
        Lisa
        Participant

        Thanks, Michelle.  The neuromuscular specialist I’m currently with is part of the Vanderbilt MDA/ALS Clinic.  Maybe I’ll have better luck with a different doctor there or through a different MDA Care Center.  Thank you for sharing the link.

    • #18861
      Jonathan A
      Participant

      I have been in remission for about 15 months so far   … from my ACUTE OCULAR  MG and GENERALIZED MYASTHENIA GRAVIS,    I am taking 2000 mgs of CELLCEPT and 180 MGS of MESTINON daily, so I am still feeling fine.  PREDNISONE is a NASTY STEROID    ….   that causes me,  like many other MG patients  …  INSOMNIA,   a large weight gain,  and medically induced    DIABETES II, when combined with being forced to take a STATIN drug.

      Fortunately my fifth hospital of 2020, was able to taper me off PREDNISONE, when I left on 11-27-2020.  So my new doctor was finally able to taper me also the nasty LANTUS syringes, by Halloween 2021,  as my losing PREDNISONE dumped my sugar scores, so I am now in Diabetes remission also.

      In these comments, you discuss finding a MG NEUROLOGIST, who actually knows what MG means in ENGLISH.   I found one finally, after searching for 8 months, and spending 5 months in 5 hospitals in 2020.   MY KNOWLEDGEABLE MG NEUROLOGIST is EXCELLENT   … and worth his WEIGHT in GOLD.  So if you find a great doctor   …NEVER let him go !!!

      It took forever for me to get even some of my medical records  … and ALLSTRIPES RARE DISEASE RESEARCH GROUP has been really wonderful in strong arming doctors and hospitals for my tests, consults, and documents  … so they can do their research with solid MG patient data … and I now know the names, dates, and times,  of the two NEUOLOGISTS and the NEURO-SURGEON, at my first hospital  … where I ended up with a CODE RED resuscitation  …. because of “ACUTE RESPIRATORY FAILURE due to ANESTHESIA OVERDOSE”.   SO I avoided those “doctors” and went to my MG SUPPORT GROUPS for advice for GOOD DOCTORS, who were paying attention in med school and rotations.

      The consulting  reports of those three  “neurologists ??” suggested all my MG symptoms were either  ….  stroke,  seizures,  drugs, drunk,  heart attack,  toxic  metal poisoning,  or some infectious disease.  So the three neurologists tested me for HERPES and magnesium,  not ANTIBODIES.   So when my first X-Rays came out NEGATIVE… but slightly blurry,  they sedated me with PROPOFOL and ROCURONIUM, according to my newly received hospital papers, so I would stop moving for MRIs and CAT SCANS.   SO I did stop moving and breathing  … until the nurse called a CODE RED.

      My advice,  once I found a NAME FOR MY DISEASE  …  MG   … and started GOOGLING LIKE CRAZY … is find an MYASTHENIA GRAVIS SUPPORT GROUP, join their ZOOM meetings … and learn from other MG patients.

      You will find out who are the GOOD DOCTORS,   …. lazy doctors with poor bedside manner and training,  and the GOLDEN MG DOCTORS.   Ask and they will tell you what medications and infusions they are on, the good and the bad side effects,  how to jump through hoops,  for insurance paperwork,  and what doctors will LISTEN  …   when you attempt to get a referral for THYMUS and ANTIBODY TESTING  … so you can PROVE that you have MG  …. and not a fatal brain stroke.

      Your support group moderator will often invite a professional to a ZOOM meeting.  Last month the Phoenix group had a SOLARIS contact person, and my ATLANTA support group had a VYVGART representative to answer your questions.  Also several of my fellow MG patients, were still on monthly IVIG treatments, and could tell me about those too. (I have only had the original 5 days of 5 hours at the second of five hospitals.) Last Saturday   4-9-2022, I  ZOOMed with a second ARIZONA support group.  On 4-23-2022, ATLANTA is doing a live, in person meeting  … but also ZOOMing for those of us attending online from out-of-state.  I believe it is 10 am to 1 pm.

      I am glad to see that Andy Coyne … from across the pond  … has been responding to this “thread”.  I use their MYASTHENIA GRAVIS FOUNDATION website  http://WWW.MYAWARE.ORG    all the time for their articles and papers, that I can download and print out, …    especially their ones on DANGEROUS DRUGS for MG PATIENTS,   what to tell the arriving EMERGENCY HELP 911 MEDICS, what paper to give to EMERGENCY ROOM doctors,  and what MG paper to give to an ANESTHESIA GIVER  … so you too don’t get your BREATHING SUPPRESSED  … when your undiagnosed MG is already suppressing your breathing  … and end up needing to be resuscitated like I was.

      I just signed up for the LONDON MG ZOOM drop in session for Tuesday 4-26-2022 at 6:30pm  … that is 10:30 am my time.  They also are having a 1 pm session on another day  …  but I still have MG onset INSOMINA issues  … was still awake at 4 am for the last two ZOOMs from there.   One of my London ZOOM support meetings  .. had 75 attendees online.   Three pages of 25 people  … five columns of faces … and five rows down.   All like me … all with MG.  I did not feel so alone  … although some accents were THICK,  like my grandmother’s side from WALES.

      My GOOGLING   …  says there are 60,00o diagnosed MG sufferers in US,  and about 12,000 across the pond, in the UK.  But they seem to have more government support, lanyards, special door keys, and other services.  What they say is TRUE   …. we are two countries separated by a COMMON language.  After several ZOOMs with   www.MYAWARE.org,  I am getting better with the accents,  but we are probably just as SCREWY to comprehend,   … if hippies, or from Boston or Texas.

      So get on an MG  support group mailing list and they will email you the date of their ZOOMs and the LINKS to click into a meeting.   SUPPORT GROUPS have given me a great help  … in helping me through this past year, and keeping me in remission.   Also,  it gives me hope, as many of my fellow MG patients, are still doing monthly IVIG  … or still trying to taper off PREDNISONE  (There but for the grace of God … go myself still).

      So find these groups and sign up  …. they keep a list of GOOD DOCTORS !!!  Your fellow MG friends will help you FIND A GOLDEN NEUROLOGIST too.

       

      • #18870
        Andy Coyne
        Participant

        Good to see you could get on the Myaware web site. They are a fantastic support covering medical, social, psychological and government disabilities advice.
        One of the things I’ve done in another FB group in the uk (mguk) is to produce a list of doctors and their hospitals from patients that have recommended them. It’s fairly easy to do for the uk as we are a small country by comparison (no one is more than 53 miles from the sea)but maybe one of you could do something similar for the US.

        • #18871
          Andy Coyne
          Participant

          The uk charity is Myaware.org if anyone wants to access it.

    • #18874
      Brad Herndon
      Participant

      I know there is so much more being discussed on this thread, but I want to echo how, in my opinion, it is so important to find a neurologist with a specialty in the neuromuscular subgrouping of neurology.  It was a night and day difference between the first neurologist I went to who, honestly, didn’t seem to have a lot of experience with MG to the 2nd neurologist who specializes in neuromuscular area.  The experience was completely different in a positive way.  I feel really lucky to at least appear to have found a good fit on the 2nd try.  I know others have struggled for a lot longer to find a good match.  Mestonin was not effective for me with my ptosis and diplopia symptoms, but so far, Prednisone, 20mg per day, is working really well.  I know its not a permanent fix, as long term use has some pretty negative side effects.  But, discussions were opened addressing this before leaving my first visit with my new neurologist, with the longer term goal to taper off steroids and move to a non-steroidal solution.  I know that will take a while.

      I am very early in my diagnosis (4 months) but at 61 years old, I know that this can get much worse.  My process actually started in 2019, resulting in a mis-diagnosis and 2 strabismus eye surgeries that have ultimately ended up unnecessary.  Thankfully, the procedures I have had do not seem to be affecting long term prognosis, and upon follow up consultation with eye surgeon, are completely reversible.

      Another thing I want to mention.  I have added to my treatment approach a total diet change.  I consulted with my PCP and neurologist about this before starting, to make sure what I was doing had no adverse affects on treatment and outcome.   I am giving a trial run to following the Lectin Free diet plan created by Dr. Stephen Gundry.  (Moderator: if endorsing a book or diet plan is not allowed on the forum, please advise and I can retract the verbiage).  He talks about how following this plan can have dramatic reversal of impacts of numerous autoimmune diseases. I know that this is not for everyone and I personally would probably not recommend it unless you are experiencing some health related issues and challenges.  But after to being on it for about a month, I have noticed a dramatic improvement in overall health, I have lost a good bit of weight despite being on the prednisone, and I think it is working well to support the effectiveness of the medication I am taking.  Think of it as a more restrictive Dr. Weil type of anti-inflammatory diet.  Lots of restrictions, so its  a tough transition.  Also, it requires a lot of meal prep and sourcing from good, organic sources, so it can be a bit expensive.  But I am finding that the costs are offset by buying less groceries, getting delivery and take out less, as they aren’t allowed (I am still not doing dine in due to Covid lingering), so that seems to be a wash.   But it does take a bit of time to get into a rhythm.  I would encourage at least checking it out.   Plant Paradox by Stephen Gundry.

      Love this site and all the fantastic information, the sharing from others of your experiences, and I come away learning something every time on log on.  Thank you all for your stories, comments and contributions!   Take care.

    • #18880
      Amy Cessina
      Participant

      I understand MG and being cautious about medications. But what I also understand is I need my teeth drilled or I need to treat an infection or have surgery so I must use the medications on the list some times. I try not to take them, but in order to stay healthy I must sometimes use them.
      If you are in the hospital with a life threatening infection or other life threatening illness unfortunately doctors sometimes do not have a choice. But if you are hospitalized they can god forbid help you breathe while they heal you, I’m sorry I can’t say I would stop a doctor from saving me by waving the MG medication list at them.

    • #18881
      Carol Lawson
      Participant

      Working backwards from some of the difficulties you have been struggling with, a sleep study is critical for your care.  During REM phase of sleep, the auxiliary muscles involved in breathing become paralyzed, and the diaphragm does the work (we call it belly breathing as you can see in infants, with underdeveloped auxiliary chest muscle) — however, in MG, many of us have a stiff, less mobile diaphragm and so we can suffer oxygen deprivation during those phases of sleep (this was finally explained to me by a brilliant sleep specialist/pulmonary doctor). I use a bi-pap at night (it was a struggle to get the machine, since medicare only seems to understand COPD and frames its requirements for lung damage, not inadequate muscle engagement).  Rapid heart beat “tachycardia” is often a symptom of this disease, and my cardiologist and I are thrilled that regular use of the machine has lessened these events, since, because he is MG literate, he does not want to prescribe medications that cause other MG problems.  The machine has been useful for those spells during the day, when my breathing is shallow, as well, particularly during heatwaves in the summer.  Having shallow breathing, swallow difficulty and extreme weakness are all serious indicators of exacerbation of the disease, and it is difficult to convince doctors of this unless they, as they are trained for other diseases to do, observe it.  You need an experienced neurologist, and a neurologist who is experienced diagnosing and treating MG that is what they call, to my dismay, “sero-negative” — which isn’t the entire picture, since they fail to do every test for specific antibodies that may occur at different points in the cascade of firing a nerve at a muscular juncture.   I went through several doctors, including one who claimed I didn’t have the disease, after an SFMG negative result, and he somehow never got around to arranging the test that he said he would do to confirm whatever phantasy he had at the tine (this is called patient abandonment) — on the staff of a major NYC hospital.  Other “sero-negative” patients had the same horrid experience.  You need to get to a support group, MGFA has lists of national support groups, and meet other patients, such as yourself, who have been able to find neurologists who have CLINICAL SKILLS, not just test skills.  MGFA also has lists of doctors, but finding other patients in your area to get the inside information on them is most helpful.  Don’t waste your life on poor communication, and don’t feel badly about changing doctors — I usually simply say to the new doctor that I am grateful for the care I have gotten, but it wasn’t a good fit.  It may take 4 months to see a neurologist, but they should be available to you given your volatile situation when necessary.  I have had this disease in full force since 2007, and only got appropriate treatment late 2019-20.  Keep going until you have what you need, the relationship you need to support your health and reach out to support groups.  It is critical that you become more knowledgeable than any doctor about your disease — it is, sadly, our job to educate them, even neurologists.  Wishing you the best outcomes, and urging you to continue reaching out.

       

      • #18890
        Lisa
        Participant

        Carol, that was an amazing explanation of the importance of a sleep study.  Thank you for sharing that!  Unfortunately, the earliest Vanderbilt can get me seen for a sleep study consult (not even the actual sleep study) is September 28th – which is 5 1/2 months from now.  And that is via Telehealth!  It seems to me a rather long time to wait to even discuss a sleep study.  In addition to the MG breathing difficulties, I also happen to have Variegate Porphyria , which can cause breathing paralysis if I happen to be in a state of porphyrin overload.  Thankfully, my VP is under control with no major porphyria attacks in a few years.  However, Vanderbilt hasn’t addressed my sleeping/breathing in regards to this issue either.  It feels like I have 2 strikes against me and no one cares enough to pay attention to the ballgame.  Because of my extensive experience in the “rare disease” world, I completely agree about the importance of educating ourselves so that we can then educate our medical team.  Sadly, some don’t appreciate an educated patient.  And you are 100% correct about the importance of CLINICAL SKILLS, not just test skills or book knowledge.  But, all I can do at this point is press on.  It has become clear from the replies on this forum, that I will be in better hands by searching out a new neuromuscular specialist.  Thank you for your reply and all the best to you on your journey.

      • #18953
        Andy Coyne
        Participant

        Carol I liked that explanation of the sleep study! My original neuro asked my GP (primary care physician in the UK) to order a sleep study a year and a half ago, still not done! I’ve had to go to another city to get action from a professor of Neurology who is a MG specialist. It’s been organised by him along with a battery of test to isolate breathing issues!

        Lisa I hope you are successful in finding a great doctor, don’t stop until you do!

    • #18883
      Matt Sereby
      Participant

      I truly feel your pain. After having my PSA being 60 when they like you to only have a PSA of below 7 I ended up with my prostate removed. The only reason my doctor found it was because I had a bout of prostatitis I believe it’s called. After that they did a PSA for my first time ever even though I have a family history. What a surprise to have him sit me down as soon as you get the results and tell me there’s no question about it I have cancer. They got most of the cancer so I still have some treatments and I’ve had radiation. During the few days I took to recuperate I managed to develop mg. Since that time I’ve become my own advocate because nobody really cares for yourself like yourself. Switched doctors obviously. I went to my ophthalmologist who told me I probably have mg after some testing. Found a neurologist and went to him. I am one of the few 50% who can be diagnosed by blood test. According to the blood test I have it but he told me it is strictly ocular. However I have problems with climbing stairs and it almost exactly coincided with my diagnosis of mg. In fact it was a little before that. He tells me that’s my imagination. I cannot walk in a straight line and I tire easily. I am right now in the process of trying to find a decent different neurologist as my last ophthalmologist visit to see about having surgery to pin my eyelid up resulted in them suggesting maybe I don’t have mg and instead have MS or something similar. I will go see whatever doctor I need to and beat on every door and demand everything I need. This has been absolutely ruining my life. So many things on hold until I can get this ironed out and it’s been since 2017 I’ve been dealing with this. Read all you can and go to your doctor with all the info you can. If they don’t want to listen to you there are more doctors out there. Many of them have simply taken the buy a new Mercedes oath versus the Hippocratic oath.

       

    • #18902
      paul spychalski
      Participant

      I get the same feeling when in the Nero. Docks office. I have the same everything you have but they each say it’s something else. THEN WHAT IS IT???????

      Good Luck!

    • #18909
      Barbara E.
      Participant

      Gracious! You’ve had a terrible time. My diagnosis about 20 years ago was so much faster. After a sinus infection, I thought that I couldn’t open my eyes because of swelling. I was surprised when the ENT instructed me to see a specific neurologist. My ENT called to arrange my appointment, which was in less than a week. After a brief exam, he told me that he was certain that I had MG, but still ordered the bloodwork.

      No one can know everything – not even specialists. I don’t know where you live, but think you should consider checking an MG website for a neurologist or neuroimmunologist with a stronger knowledge in MG. I’ve used information from the Myasthenia Gravis Foundation of America (MGFA), who has a webpage to look up MG specialists by location. Then check their background online and speak to someone in the office about the doctors experience in dealing with MG. If you’re still having problems, the doctor should want to see you every few weeks or monthly and encourage you to call if you have any issues/concerns. Life is too short to tolerate uncaring jerks! Stay strong and push for what you need!!

    • #19230
      paul spychalski
      Participant

      I have experienced the same DAMN thing, I feel like they know or don’t care, they don’t go the extra mile to find out. I’d like to find any doctor that can prove it’s MG, or what it is. I have all the same problems as you and others on this site. WHAT DOCTOR’S KNOW MYASTHENIA GRAVIS AND CAN ACTUALLY HELPPPppppppppppp!!!

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