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  • MikeS

    Member
    April 20, 2022 at 7:44 pm in reply to: Pain and Myasthenia Gravis

    Last year I started Mestinon and also concurrently started getting leg cramps. I didn’t realize that they might be related until I read your message.  I get them at night in bed usually before falling asleep.  I can also initiate them by extending or flexing my foot, and surprisingly my toes, too.  I’ve been trying Magnesium pills for a couple of months (they are supposed to relieve muscle cramps, I’ve been informed) but no relief so far.  I’m interested to see other responses to your question.  Thanks!

    Mike

  • MikeS

    Member
    April 13, 2022 at 11:51 pm in reply to: New To Diagnosis and at a loss as to how to handle.

    I was diagnosed about 1 year ago (1st episode was just ptosis about two years ago) and have had two additional episodes (mostly facial muscles involved, i.e. droopy eyelid, tongue, etc.) since the first. On my third episode last December, the neurologist put me on 20 mg prednisone plus 180 mg timed-release Mestinon. All my symptoms (tongue, swallowing, eyelid, other facial muscles) disappeared after a couple of days. Since then I’ve been slowly weaned off the prednisone and am now at 10 mg/day.

    When I started at 20 mg I had to also take Bactrim daily until the pred was reduced to 15 mg/day. The combo of 20 mg pred and Bactrim was not kind to my body, particularly my GI system. I don’t like the current side effects of the pred 10 mg dose, but if it prevents another episode, I’m all in.

    BTW, on 20 mg pred for one month, all my arthritis symptoms (esp. hands, knees and back) greatly decreased and my joints hadn’t felt that good in many years! Unfortunately, as the pred dose has decreased, the arthritis has returned to “normal”. So I do have one good thing to look forward to (besides relief of MG symptoms) when I get another episode and my pred dose gets bumped back up to 20 or more.

    Good luck with your treatment and doctors. Mike

  • MikeS

    Member
    March 26, 2022 at 1:28 am in reply to: 4th shot?

    I got my fourth shot (2nd booster) this week.  All four were Moderna.  My 1st booster was 4 months ago in mid November.  Except for one evening of fatigue after the first shot a year ago, in all cases my only post-shot symptoms have been shot-site pain and swelling.

    I had gone to see an MD about getting my hernia fixed and asked on the side if they (Kaiser) were letting immunocompromised patients get a 2nd booster, as the CDC recommends.  They basically said, “Sure, why not.”   That was unexpected since Kaiser had not ever suggested to me, considering my MG dx., about getting the 2nd booster.

    I now feel that I’m as vaccinated as a person can be, but will still continue wearing my N95 masks at ALL indoor locations except my home.  I also avoid all outdoor events with crowds and all modes of motor transportation except my own car.  The BA.2 variant is now surging here in So. California, having doubled in case numbers in just the past week.  Be careful out there!

    Mike

  • MikeS

    Member
    March 26, 2022 at 12:53 am in reply to: Does Temperature or Weather Trigger Your Symptoms?

    Has anyone come across any scientific suggestions about what physiological mechanisms might be causing MG exacerbation from heat?  Our inevitable future of worsening heat waves looks to be a growing problem for us MGers.

    Mike

  • Hi, Chris. I’m 68 y/o. My MG first manifested two years ago with diplopia. Took a while (approx 1 year) for neurologist to reach MG diagnosis. No treatment or meds given. My second event was last year with diplopia, ptosis, and swallowing, chewing, and tongue issues. 60mg Mestinon was prescribed, followed later by 180mg extended-release. A few months ago I had my third episode and was put on 10mg prednisone. One month ago I was put on a 1-month regimen of 20mg prednisone and Bactrim. Now all my symptoms are in remission and I feel good, especially my stamina. I know I’ll have subsequent events (I’m a realist) and it looks right now like low-dose prednisone will be my symptom-reliever going forward. I realize now that “Myasthenia Gravis” is more of a catch-phrase for many different anomalies that affect acetylcholine receptors, as evidenced by the wide variations in synptoms and their intensities. (But what do I know…)
    Mike

  • MikeS

    Member
    January 8, 2022 at 12:35 am in reply to: Can You Tolerate Alcohol?

    I’m taking 240mg pyridostagmine and have the equivalent of 2-3 beers’ alcohol per day. So far I haven’t seen a correlation between when and how much I drink and change in my usual MG symptoms.

  • MikeS

    Member
    January 8, 2022 at 12:16 am in reply to: Medication Provoked Myasthenia Gravis Symptoms

    I had my first MG episode 2 years ago about 2 days after receiving a cortisone shot and 4 days after getting Shingrix vaccine (shots were 2 days apart). I’m reasonably confident that this shot combination was the trigger.

  • MikeS

    Member
    December 10, 2021 at 10:29 pm in reply to: Additional Diseases/ Illnesses on Top of Myasthenia Gravis

    Hi, Jodi. I had my first MG episode last year (a couple of weeks before Covid appeared here in California), manifested by just diplopia. At the time a neurologist couldn’t pin down the MG diagnosis due to only the single symptom and no confirming test results. This year, before my 2nd and more extreme event (tongue, swallowing, drooping eyelid, facial muscle weakness, slurred speech, etc.) the neurologist had me do more tests and finally got enough evidence to label me with MG. So we weren’t surprised when the second event started. I’m fortunate to not have any other debilitating health issues. My other main problems are reflux, nasal allergies, life-long anxiety disorder, arthritis and bulging spinal disks. Let me just say, not knowing when the next MG event will occur and how serious it will be is not helpful when you have to deal with anxiety in general. Has anyone else seen their diagnosed anxiety disorder worsen with MG, and, if so, have you found any way to mitigate it? Thanks. Mike

  • MikeS

    Member
    December 10, 2021 at 9:52 pm in reply to: Ocular MG – Hacks, tricks, tape, etc?

    Hi, Michelle. I had my first instance of droopy left eyelid a few months ago. Initially I would hold my eyelid up, while driving, with my left fingers. That got old and useless quickly, even on short drives. I got out the scotch tape and tried taping my eyelid to my forehead. That seemed to work much better. I would place the lower end of the tape just below my left eyebrow, pulling up as needed before attaching the top end to my forehead. I used this technique until the drooping decreased to the point that I didn’t need it (around 3-4 weeks later). Besides driving, I also would tape up my eye for TV viewing. The scotch tape is hard to see, so it doesn’t look so bad in public. If I went shopping I would wear a baseball-style hat to cover my forehead and pull it down slightly to reduce visibility of my raised left eyebrow. I was diagnosed only recently and came up with this on my own, so if there are other better solutions for drooping eyelids, I’d sure like to hear other peoples’ ideas. Thanks! Mike

  • MikeS

    Member
    October 12, 2021 at 9:42 pm in reply to: Flare-Ups

    I was “fortunate” to be hit with late-onset MG.  1st event was only diplopia.  2nd and most recent included diplopia, drooping eyelid, difficulty swallowing and chewing, slurred speech and facial muscles weakness.  I didn’t receive the diagnosis until the 2nd event.  I now have Mestinon on standby for the next event.  At this point I don’t have any clues about my potential triggers or how long they might take to manifest the MG.  Any hints or suggestions for this newbie on what potential triggers to look for or avoid?  Any advice or suggestions are much appreciated.

    Mike

  • MikeS

    Member
    October 12, 2021 at 9:05 pm in reply to: How easy it is for doctors to miss myasthenia Gravis

    In January 2020 I developed diplopia.  The ER ruled out everything they could think of.  They referred me to a Neurologist.  The Neurologist had me try every test she could think of that might prove MG, but everything was negative.  The diplopia disappeared after 2 months and the MD decided to r/o MG.  This summer I developed diplopia (again), slurred speech, difficulty swallowing, drooping eyelid, and weak facial muscles.  This time the (same) Neurologist confirmed MG (yay?).  I’m 68, so it’s late-onset.  So, yeah, apparently even good MDs find it sometimes difficult to diagnose.

  • MikeS

    Member
    April 16, 2022 at 3:39 pm in reply to: 4th shot?

    Why did you decide on Evusheld for your 4th?  Did your MD recommend it?  Mike

  • MikeS

    Member
    April 8, 2022 at 8:40 pm in reply to: How do I know if I’m with the right Neurologist/Neuro-Specialist?

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

  • My Neurologist said when the prednisone dose is at 20mg or higher each day, the hit on the immune system’s functions can be partially mitigated with antibiotics.  I don’t know yet why Bactrim in particular is prescribed (in my case, at least).

    I just completed a 20mg daily prednisone regimen (for 4 weeks due to my recent MG episode) which included Bactrim.  The Bactrim was stopped last week when my daily prednisone was changed from 20 to a daily average of 15 mg, so I therefore assumed that 20 mg was the minimum level for taking Bactrim.  I will have to take 15 mg for 4 weeks before getting dropped t0 10 mg for however long is necessary.  I’ve responded really well to prednisone (all MG symptoms currently in remission!) but know that it will eventually take a toll on my body, so I hope I can come off completely (until my next major episode, of course).  Good luck!

  • MikeS

    Member
    February 3, 2022 at 4:20 am in reply to: Ocular MG – Hacks, tricks, tape, etc?

    Sharon:  Thank you so much!  I reviewed Lids By Design and decided to give it a try during my next ptosis eposode.  I found a sample pack on sale on Amazon, and figured that would help me narrow down the size I would need going forward.  Thanks, again!  Mike

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