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  • ronald-e-clever

    Member
    May 3, 2023 at 3:57 pm in reply to: What money can buy?

    I would think that the insurance dictates what they will pay for as to administering IV.  I am on Vivgart and before that IVIG and they have always sent nurses to my house for treatment.

  • Kevin,

    Thanks for the info. I am also on Vivygart and recently left my job on disability.  My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART but I figure that is only a matter of time.

  • Kevin,

    Thanks for the info. I am also on Vivygart and recently left my job on disability.  My insurance at my job expires at the end of 2023 so I hope my SS disability is approved by then. My insurance started charging me the 20% on everything and it is adding up with all the appointments I have. So far I haven’t been charged for the VIVYGART but I figure that is only a matter of time.

  • I am 61, weigh approximately 425lbs.  I started out with double vision about 10 years ago and it came on sporadically so I never thought much about it.  Then in 2017 it came back and would not leave.  My opt neurologist diagnosed me with MG and sent me to my neurologist,  Since then I have deteriorated.  I have a difficult time taking a shower as I get to damn tired.  I now walk with a cane since my legs have gotten so weak that I* fall often.  The cane gives me more balance.  I am leaving work as of June 1st on disability.  I have trouble breathing and swallowing but not all the time.  I still work presently but it is very difficult and June 1st cannot get here quick enough.  I am hoping once I am out of work that I can concentrate on my health and get much better but who know.  It has been a progressive disease for me.

  • ronald-e-clever

    Member
    March 15, 2022 at 6:22 pm in reply to: D Symptoms of Myasthenia Gravis

    double vision

  • ronald-e-clever

    Member
    March 15, 2022 at 6:17 pm in reply to: Do You Vomit Through Your Nose?

    I have a problem while I am eating that food will go up my nose and it is very uncomfortable until I am able to get it out.  I love curry and it really burns.  I don’t know if this is what you are referring to or not,  I never thought of it being related.  I have to eat really slow and be very careful especially with rice.

  • ronald-e-clever

    Member
    March 9, 2022 at 3:59 pm in reply to: How Does Myasthenia Gravis Intrude in Your Day?

    I am still working but plan on going out on disability June 1.  I start out the day by driving 75 miles to my office.  I then plan what I need to get accomplished that day since I can only do so much since I have to have the energy to drive home in the evening.  By the time I get home in the evening I am exhausted and can barely stay awake to eat dinner, I get out of breath just walking from my car into the office and stay in my office most of the day.  I work with some wonderful ladies that make sure I have all I need when they go to lunch or down to the kitchen.

    On a personal level one of the activities that wears me out is taking a shower.  I am over 400lbs so that along with the MG exhausts me so I manage one maybe two complete showers per week.  I do manage a PTA bath on alternate days but luckily I have an office job and an office by myself so I hardly ever sweat. I have a good friend at work that checks me to make sure I am not letting it go too long and so far she has never had to tell me.   I have had to add more time to my morning routine since I cannot wake up and be ready in 45 mins.  I leave the house about 6:15am so I am usually up by 4:30am – 5:00am.  This has cut into my sleep time but it is necessary.  I am hoping that once I have quit working I can concentrate on my health more and drop some weight.

  • ronald-e-clever

    Member
    February 23, 2022 at 7:09 pm in reply to: Working with MG diagnosed as a senior

    I am 61 years old, getting ready to leave work on disability due to being out of ;breath everywhere I go.  I weigh in at a whopping 425 lbs which is definitely part of my problems.  But I have been overweight all of my life but never as big as prednisone has made me along with the other drugs.  It seems any drug I take either makes me hungry or sleepy.  That is the main reason I have to quit working.  I commute 90 mins each way for my job and I am constantly falling asleep at work.  It takes me forever to get home since most nights I have to pull into a parking lot and take a 30 – 45 minute nap so I can finish my trip.  I have started walking with a cane since I have a tendency to fall and have had to be taken to the hospital due to cuts to my forehead and bleeding.

    I have other ailments as Asthma, Sleep Apnea, High blood pressure, High Cholesterol and under active thyroid.  I would love to think I will have a period of remission like I read some of you have experienced but I doubt it.  I also do the IVIG treatments and feel much better for the first two weeks afterward but then the next two weeks I go downhill.

    Hopefully I will get approved for disability and not have to worry about traveling to work and keeping my job and just to concentrate on my health.

     

    Thanks for listening.

    Ron Clever

    • ronald-e-clever

      Member
      February 23, 2022 at 7:13 pm in reply to: Working with MG diagnosed as a senior

      Heather Kaye,

       

      Your last line says it all to me.  I feel as if I have been exhausted for the past 15 years.  I can’t even sit to watch a movie or an hour long show for some entertainment without falling asleep for 3 or 4 hours.  And since I commute and work I am sleeping all weekend.

  • ronald-e-clever

    Member
    February 23, 2022 at 6:49 pm in reply to: Do you have Seronegative MG?

    I am sorry to be so uninformed but what is Seronegative MG and how would I know if I have it.  Should I be asking this question to my neurologist?  She is very good by the way but I have never heard of some of these variances of MG.  I only know I have generalized MG.

    Thanks

  • I have been treated by Dr. Wagle at John Hopkins from the beginning and could not be happier. She is very attentive and present with my therapy. My local neurologist didn’t know what was going on and I went to John Hopkins on my own and have never looked back. I am not in perfect health of course but I am doing pretty well. I have other issues besides MG.

  • ronald-e-clever

    Member
    December 16, 2021 at 1:00 am in reply to: Ocular MG – Hacks, tricks, tape, etc?

    I have had double vision from the beginning of my journey. My ophthalmologist is the one who had me tested for MG.  I have always had prisms in my glasses so that I can drive. I am fortunate to have great insurance from the union I work for. My right eye drops more than my left but I never really noticed until I started reading again and now it presents a problem. It has not closed off completely but I am always looking through my eyelashes. My glasses would cost about $1300 if I didn’t have insurance and still set me back around $500 but I can’t be without them since I commute 90 mins each way to work.   Luckily i have “readers” for use on the computer.. it seems the double vision only effects my long distance.

  • ronald-e-clever

    Member
    December 9, 2021 at 3:02 am in reply to: Using MG as an Advantage in the Workplace

    I am an Accountant so as I like to put it I polish a chair with my ass. I have been trying to put off retiring since my current job is one I really like but now at 61 it looks as though I will have to give in. I fell two weeks ago at work in the bathroom. Luckily other people heard me hit the floor and they called an ambulance since I was bleeding above my eye.  I ended up with two black eyes and very sore ribs since all of these 400 lbs hitting the floor could not be stopped. I have fallen again at home since then and reinjured my ribs. I have to admit my legs are too weak to continue working. I was hoping to make it to next Oct but don’t think that is feasible anymore. My co-workers are so understanding and give me help and my boss is FINALLY coming around. I hate to leave mainly because of the money but I am so damn tired .

  • Wow this is right up my alley.  I sleep at most 4-5 hours a night and I commute 90 mins each way to work.  I am hoping to go out on disability with in the next 10 months but we shall see.  I also have sleep apnea and am morbidly obese weighing 425lbs.  I have had several sleep studies over the years but now with MG I just had a new one and they want me to come in for a second one.  I feel as if i am being forced out of my job since I have been reprimanded several times for falling asleep at work.  Luckily I am a Union member and they have managed to keep me in my job but I am afraid time is running out.  I use Melatonin sparingly since it makes me too tired in the morning and I only take 1/4 a pill of the 1mg dosage.  I know it is my meds & MG keeping me awake cause it has never been this bad.  I take 40mg of prednisone and 1500mg of CellCept per day along with blood pressure meds, depression meds, etc.  Half my meds keep me awake and then the other half try to put me asleep in the morning.  My pulmonologist is trying to get me to use the CPAP but with breathing issues from MG I don’t know if that will be possible.  This is all such a struggle.

  • ronald-e-clever

    Member
    November 4, 2021 at 12:34 pm in reply to: Informing Your Employer About MG

    UPDATE:  It looks as though I will be retiring in 10 months when I turn 62.  I don’t want to retire yet but in all honesty the commute is what is wearing me out.  I drive 90 minutes each way so I will probably try to find something close to home or work remotely.  I have been lucky that my IVIG is done on Friday & Saturday so I only had to take off one day per month.

  • ronald-e-clever

    Member
    October 29, 2021 at 10:39 pm in reply to: Taking Care of Pets

    I understand how you feel. I want to rescue another big dog, we have 3 little ones but I am letting that up to the others as they will be doing most of the work.

  • ronald-e-clever

    Member
    October 29, 2021 at 10:28 pm in reply to: Informing Your Employer About MG

    I am going through that now. He doesn’t seem to get it or doesn’t want to. I fall asleep at my desk frequently and he has given me 3 written warnings. One more and I can be fired and I have worked here for almost 10 years. Luckily I belong to a union and they are working with me to keep me employed.  I have a family that depends on me financially even though I am 61 years old. At times my boss acts sympathetic and other times not so much.

  • ronald-e-clever

    Member
    October 21, 2021 at 2:42 pm in reply to: Disclosing Your MG When Applying for Jobs

    i am worried about this very thing at the moment.  My boss has been very unreasonable about my health.  I don’t think he believes I am having the problem I do, especially with fatigue.  He as caught me falling asleep at work and one more infraction and he say he will have no choice but to fire me.  I am in a union and have reported this to them and we have a meeting with my boss the beginning of next week.  I hope this can be resolved.  I am so stressed over this situation that I can’t sleep and that makes the problem worse.  In addition I travel 90 mins each way for work and with double vision that is no picnic.  I am looking into filing for disability but not sure I would qualify.  Is there a resource through here that could give me advice on this or should I just get a lawyer?  Any advice is welcome.

  • ronald-e-clever

    Member
    October 7, 2021 at 12:27 pm in reply to: Working From Home

    I don’t want to do disability even if I am able.  I would rather work but at 61 and with many health issues on top of MG getting another job is not an option.  I weigh over 400lbs and at 61 finding a work from home job would be a miracle.  I also take care of my sister as much as I can.  She has dementia.  There is not enough time in the day and I am just so tired all the time.  I don’t know how much more I can handle.

  • ronald-e-clever

    Member
    October 6, 2021 at 7:41 pm in reply to: Working From Home

    I wish I could work from home but my boss is not a big fan.  He doesn’t think we get as much done as when we are in the office.  I have a 90 minute commute and not to have to drive with double vision would be great.  I have corrective lenses but they get more expensive each year.

    Has anything been discussed on here about disability?  Is it hard to get with MG?  I also worry about what I would do if I was off on disability.  I need work, to give me a purpose.

  • ronald-e-clever

    Member
    October 1, 2021 at 8:01 pm in reply to: Shopping for Clothes Online vs. In Person

    If I can’t buy it online then I don’t need it.  I was buying my groceries on line before the pandemic for pick up but have since switched to delivery and it is much more convenient.  As for clothes I am a very big man (over 400lbs) so I am very limited to where I can buy clothes.  I have not been able to buy clothes in a mall or regular store for many years and although the designs for the “big guy” leave a lot to be desired I would not go to a store if I could.  It is too hard at my size to change anywhere other than my bedroom which I have set up for me and with the MG it is more difficult.

  • ronald-e-clever

    Member
    October 1, 2021 at 1:01 pm in reply to: Flare-Ups

    Theresa,

    When I got my diagnosis several years ago I also tested negative for MG the first two times.  Finally I took it upon myself to go to the Wilmer Eye Institute in Baltimore, part of John Hopkins and that is when the optical neurologist found that I had MG.  I am on 4 pills of Mestinon  down from 7 per day, 40mg of Prednisone up from 20mg, 1500mg of Cell Cept up from 500mg and IVIG every 4 weeks.  I still have my bad days but I have no idea how bad they would be without the meds.  My meds are by the determination of my doctor who I keep in close contact with.  I haven’t had the bad flare ups that some on here have experienced.  I have the droopy eyes, double vision that will not get better or go away, aching arms and legs, swallowing issues and gastronomical issues from the meds.

    I think like so many things this disease varies from person to person.  No two will have the same regimen of meds.  I hope you get a diagnosis soon since that is when I started taking all of the meds and they do help.  GOOD LUCK.

  • ronald-e-clever

    Member
    September 28, 2021 at 2:04 pm in reply to: Taking Care of Pets

    It is ironic that I ran across this subject today as I just had one of our four dogs put to sleep last night.  He was a Newfoundland mix and the sweetest most loveable friend  I could ever want.  From the time I came home from work until I left the next morning he was by my side.  Taking him to the groomer or the vet was a major challenge and I am lucky that my sister and nephew live with me.  I could not take care of these dogs without them but I don’t see how I could not have dogs as they are a great comfort to us.  The care has changed a bit and I try to help as much as I can but because much of the work is when I get home I am not able to do much since it is the end of the day and I am at my weakest.  I try to make up for it on weekends.

  • ronald-e-clever

    Member
    December 28, 2021 at 2:57 pm in reply to: Ocular MG – Hacks, tricks, tape, etc?

    <p style=”text-align: right;”>As far as the double vision I still have that and it has not improved.</p>

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