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  • Your Myasthenia gravis symptom that responds least to treatment

    Posted by jodi-enders on September 7, 2023 at 10:51 am

    What Myasthenia gravis symptom do you have that is the most difficult to control with treatment? Was there ever a point in time that this symptom was managed or improved? 

    bli-shame replied 2 days, 21 hours ago 20 Members · 19 Replies
  • 19 Replies
  • charles-karcher

    September 8, 2023 at 2:22 pm

    My symptom that is only partly controlled is my double vision. I have double vision if I look at something off axis. I also have double vision if I have my head down and look up with only my eyes. If I look directly my vision is fine. None of my treatments have stopped this. If that is the worst I have I can live with it.

    • D Evans

      September 15, 2023 at 5:19 pm

      My symptoms are pretty much as yours . I’ve wondered if mine were unique. Apparently they are not. In the beginning,” about 5 years ago “ my sight was blurry . After mestinon and IVIG my straight forward vision is perfect . If I roll my eyes in any direction I get blurry or double.

    • sally-w-hardter

      September 17, 2023 at 11:23 am

      Exactly the same here but add ptosis, mostly in one eye!

  • ann-wolovits

    September 8, 2023 at 2:47 pm

    My eyes – the lids don’t close but they flicker/ dr says not mg but never had it until mg dx

    Also nasal speech has gotten worse not better

    On my 5th round of Vyvgart

  • rosanna-langley

    September 8, 2023 at 4:24 pm

    Mestinon seems to help all my symptoms when they decide to appear.

  • phyllis

    September 14, 2023 at 10:43 am

    My fatigue and ocular symptoms seem to be ongoing despite mestonin and several unsuccessful attempts at IVIG. I have my fingers crossed that I am approved for Ultimoris infusions & pray that these infusions will help me.

  • winston-d-roden

    September 15, 2023 at 2:09 pm

    It is hard to decide. Weakness or double vision. I guess I would put ocular problems on the top because they cause weakness if I push my eyes too hard. And the double-vision is present all the time. I feel that I am looking cross-eyed at everything and can only get relief when I block out one eye. The weakness hits when I am least prepared for it.

  • da20a1u

    September 15, 2023 at 2:12 pm

    I have always had Optical problems; water in both eyes, both eyes weak, having to rest them many times a day, but no eye lid drop so far.

  • claire-m-walsh

    September 15, 2023 at 2:58 pm

    Dysarthria and fatigue! Did not have speech problems for about 2 years after original diagnosis and MG crisis and 1 1/2 years of IVIG. Has seriously returned while on Vyvgart for over a year. Will transition in December, hopefully, to Rituximab. Anyone out there on this?

    • robert-b

      September 15, 2023 at 9:10 pm

      I would be interested to know how you do if you go on Rituximab. A previous neurologist that I had suggested that I give it a try a number of years ago, but after the trouble I had with insurance getting on IVIG, I was afraid to get off of it. This was back before the newer MG drugs had hit the market.

      I’ve had gMG for 9 1/2 years and been on IVIG and Mestinon the entire time. Fatigue is my biggest issue, but the IVIG infusions help a great deal.

  • theresag

    September 15, 2023 at 3:58 pm

    I’m glad this has been brought up for a couple reasons. I think it good we all learn that few of us are ever relieved of all symptoms. That would be remission. Lucky those that get it.’

    I too am on vyvgart. Cycle 11. My eyes, double blurred vision and droopy eyelid never stop. My neuro shared many have this issue. I did have 10 days a couple months ago where all my symptoms were gone. It was amazing. Not since. In fact I don’t seem as good on treatments today as I did at 6,7,8 months. I also am on 7 mg prednisone and mestinon. I really have to support with the mestinon. The weakness has been real bad recently. I also wonder those of you on Vyvgart and other treatments. Does it seem to you that your symptoms vary ? I feel like they rotate and one day/week/month maybe it’s bad weakness and fatigue, then others it is my breathing, then others it’s eyes. I was nearly blind in one eye for 5 days. It’s all so weird. They vacillate a lot. Just curious if others experience this?

    I was offered Rysstigo but it has the possible side effect of meningitis which scares me. It apparently suppresses 80% of the antibody versus 60% with vyvgart.

    Any of you have continued good results with vyvgart?

  • jerry-johnson

    September 15, 2023 at 5:16 pm

    Mine is my jaw weakness. It responds but is short lived.

  • stanley-martin

    September 15, 2023 at 7:44 pm

    My vision is getting worse. I take azathioprine 1 time daily 3 1/2and pyridostigmine 2 3x daily

    Visions are blurry and eyes water

    Speech is like a drunken sailor

  • tina

    September 16, 2023 at 12:02 pm

    my symptoms ranked as to frequency and severity are, speech degradation, swallowing, tired eyelids (especially the right eye), fatigue, sleep issues, gait, attitude changes, falling

    I finally got my neuro to double mestinon to 60mg 2x day after pressing her for 2 years, and she said if it didn’t help enough she would go 3x a day. I’m seeing a new neuro this month to see what she has to offer. I take other meds for Parkinson’s, seizures, headaches and neuropathy, and she’s always said they address gMG too. Admittedly, my symptoms have increased slowly since I’ve been on the mestinon, so I’ve been patient, but the speaking and swallowing have become more intolerant lately so I’m pressing for more assistance. I’m losing my patience with this disease treatment. When I was younger I had steroid treatments and it seemed to frequently go into remission, although I ended up with severe osteoporosis, but this is getting intolerable with the swallowing issues

    I just had barium swallow tests which came up abnormal so my GI dr is doing an endoscopy to see if there’s anything physical before they decide to do some other meds. Three doctors said I need speech therapy regardless. I used to be very articulate, a singer, teacher and did seminars, as well as drove for a living as an auditor, then had to “retire” at 55 despite being at the top of my game professionally, so it’s really abhorrent what this disease and PD has done to me. Thanks for listening

  • douglas-manning

    September 16, 2023 at 6:07 pm

    As I reach tiring points throughout each day I will experience diplopia and dysarthria regardless of where I am in a treatment cycle. They are almost like old friends after managing MG for 7 years. But the one symptom that continues almost unrelenting in my 7th year is chewing and swallowing fatigue. As others in this stream have commented I have had swallowing studies to confirm that my swallowing is quite disregulated and so far we haven’t found an answer. The choking and coughing makes we weaker which the exacerbates other symptoms. It has also caused 2 aspiration pneumonia episodes this year. So, yeah, swallowing is always hard.

  • gina

    September 17, 2023 at 3:03 pm

    Swallowing , smiling. Speech and eye fatigue. I have mg for more than 50 years and currently take no meds although I have symptoms. The last two neuros seen says these are leftovers and I am probably stuck with them. My right side face also drops.. I don’t even know if meds can help at this point.. I do have mestinon but I don’t see any difference..

    • gaylee-lacorte

      September 20, 2023 at 4:09 pm

      I was diagnosed in 2022 I slipped out of bed and was paralyzed and couldn’t yell for help! Thank God my daughter found me I was diagnosed in 2008 had the antibodies but Never had a symptom until 2022 I had thymona removed was cancerous . So when this happen I didn’t know wat was happening to me. I had 10 treatments of plasma aphersis it help but took months to be able to shower- feed myself or even talk without slurring.I had double vision while in hospital 16 days. And once needed to wear an eye patch. I did have breathing problems 1 yr later but now finding out I had fluid around my heart so don’t no if that was the mg. I’m doing ok now I’m on prednisone which now I have a fractured vertebrate probably from steroids. Trying to get now. Need to take insulin also. I never had sugar problems hopefully I can stop steroids . With this mg no one really knows what’s next!

  • Coro

    September 20, 2023 at 11:45 am

    Fatigue and Muscle weakness is my issue. I am 67 and off all meds . Told that nothing works for these symptoms. These are minor issues for many but it is my major issue. Excited by new sun cutaneous man injections but wonder if I will ever qualify for these expensive drugs ? Love to try . 😊

  • bli-shame

    September 22, 2023 at 3:17 pm

    This reply is to Tina and to Theresa’s. I find it very disturbing that in both of your cases your neurologist is not more aggressive with the best anon. Mestinon works. It can be taken as much as 12 times a day. They side effects being diarrhea. If you take more than 12 or even approaching 12 you may get a paradoxical reaction where your myasthenia gets worse but certainly you can increase your medicine on quite a bit. Taking 7 mg of prednisone is simply not enough in your case you need to increase your prednisone.. I hope this is helpful.

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