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  • Thomas Lee Clark

    Member
    November 24, 2023 at 8:18 pm in reply to: How easy it is for doctors to miss myasthenia Gravis

    Back in the 1960’s I think I saw an episode of Ben Casey and a patient was diagnosed with MG and part of the discovery was acute pain? When I experienced symptoms I saw a ophthalmologist who wanted to correct my drooping eyelid. A nurse at the mfg. plant where I worked told me about MG and my PC sent me to the university where a Syrian Doctor was well versed re MG. I later learned MG was very often missed and treatment schemas was not well known. I did not experience pain to the degree Ben Casey saw for his diagnosis and I feel theatrics was at play for a not so well known disease. After my Thymo job I have been symptom free for over twenty years. I am always looking over my shoulder for return of symptoms. I am 78 now and several docs have discussed symptoms with me. Strange illusive disease.

  • Thomas Lee Clark

    Member
    September 6, 2023 at 4:08 pm in reply to: The MyastheniaGravisNews.com Forums is getting a makeover!

    Jodi, The web site is polluted with advertisement making it nearly impossible to navigate as the ads pop and obscure content. The print here is larger and easier to read and more crisp and darker, not bold but darker. This has been a great thread on MG. Sadly it is not an improvement to crow about. The content is good, timely and useful. You want to use cookies, I don’t. Hope you get this worked out and back to making the mainest thing the mainest thing.

  • Thomas Lee Clark

    Member
    August 18, 2023 at 8:13 pm in reply to: Have you asked yourself in regards to MG, “Why me?”

    Staying positive has helped me through many of the crisis times. My question was more like, why not me. I have had strong reinforced faith and I was one who was blessed with the thymectomy working. I pray for those still on this MG journey. Medicine chasing wears at a person. It helps to be a certified crazy ’cause this disease will bring you to the crazy edge.

  • Thomas Lee Clark

    Member
    July 12, 2023 at 9:01 pm in reply to: Remission

    Any time for me when the symptoms lessen I felt like I was “In Remission”. Never out of the woods. When I get extremely tired driving into headlights I still get flares of double vision. After the thymo I was and have remained symptom free, yet, I watch and my primary encourages me to do so. I was recently put on a drug for bladder control that stated not if you have MG I searched and stopped with no seeming harm. This is a wild disease and I am thankful my symptoms are really gone. The return fear is not. Every time I choke I have a little snap back.

  • Eye Patch When Ocular first arose I tried the pirate patch and could not abide it touching my face. the tape-on vision disc was best for me. for  short while it was too disorienting to walk with eyes open at all. I was led around. Now I am going through cataract  and retina work and still can’t stand the patch. As my “good” eye tires the vision gets squirrely and my mind is brought back to MG days. The doc said it is always in the background. At onset of MG I still had flashes of light in rite eye while covered. Mg had constant changes for me.

    I kept looking for A bridge to jump but I always tried climbing up the wrong one of the two. Driving in a construction zone and the convergence of orange and red barrels was fun too. same bbls two colors.

  • Thomas Lee Clark

    Member
    June 30, 2023 at 9:05 pm in reply to: Magnesium and Myasthenia Gravis

    I have had a Thymectomy and since no symptoms at all. I am growing older which is a tolerable symptom. Doing so is much better not fighting MG. It was really bad.      Recently the urology doctor prescribed for me oxybutynin then I read the warning; Before using oxybutynin, tell your doctor if you have glaucoma, liver or kidney disease, an enlarged prostate, myasthenia gravis, ulcerative colitis, a blockage in your stomach or intestines, or a stomach disorder such as gastroesophageal reflux disease (GERD) or slow digestion.

    I have been going to him (urologist)for years and this drug must be a standard but I have learned to police my drugs. This site is invaluable and even with the best docs we need to mind what we do. My primary tells me this often. Mg is illusive and a definite maybe disease.  I am thankful for this site.

  • Thomas Lee Clark

    Member
    April 1, 2023 at 9:57 am in reply to: Thymectomy-Above Age 50

    I am now 77 almost 78 and had my thymo operation years back, I struggle to remember age! However, I had a wonderful Neuro and she was insistent on only one surgeon to do it. He used the long hand method and went after every speck of the thymus, when I awoke, I was healed. Sight was good and my extreme weaknesses except for the surgery, which was open chest, (can still feel the wires in by breastbone) The guy was great and the prognosis was sometimes. I had gone gMG and the drugs I was taking were not effective. I worked and traveled for the job drove many miles using one eye and often choking. I owe my recovery to normalcy to good doctors and strong faith. After my first retirement I drove trucks for 3 years, was able to pass physicals for the CDL, corrected vision and a great life since the thymo. I now see a red light as red and not orange with right eye, so I wore a patch. Now I am going thru cataracts and retina problems in right eye but I am prepared.

    This is a great Forum.

  • Thomas Lee Clark

    Member
    July 20, 2022 at 2:12 am in reply to: Blue Light Eases MG Eye Weakness

    I just got blue lite clip on. Blue lites bother me Blue headlites on vehicles, blue lites on cruisers and some christmas lites. I think they mite be LED style not incandescent. I have asked the eye doc regarding the pain at times in the back of my head. Just got them today and are comfortable. Not sure if MG had any cause or affect. Wait and see for me. A nice thanks for this blog especially as I age. Thanks

  • Thomas Lee Clark

    Member
    July 16, 2022 at 8:51 pm in reply to: Blue Light Eases MG Eye Weakness

    I just ordered clip on from amazon. Blue lites, especially the headlites and emergency vehicle flashing lites are miserable. led christmas lites hurt but not as much incandescent. What I know is I don’t know much but I will try. My astigmatism does not help and it may be the greatest contributor.

  • Thomas Lee Clark

    Member
    June 8, 2022 at 8:04 pm in reply to: Saying No to Participating in Clinical Trials

    This is the same reason I did not take the “JAB”. I  take anti-coagulants and Clotting problems are suspected with the Jab. The kidney guy tells me not to receive dyes for xray. I am not fearing death but I would rather die than experience general MG again.  I was positive for covid and lived. The complication remaining, is my teeth itch and their is a twitch in my eyebrow.

  • #19225 I posted on the clotting the info on COVID My mistake. Covid did not cause this malady I was born with it. I had the Omicron version, nearly none of the classic symptoms. No fever, taste and smell ok but tiredness and sleepiness is hanging on.

  • Thomas Lee Clark

    Member
    May 20, 2022 at 11:53 pm in reply to: Question about IVIG and blood clots.

    My entire experience including before MG started with clotting and it was thought to be autoimmune disorder or mediated. There was a DVT in right calf and behind right knee. Then a series of superficial thrombophlebitis. There was never a good diagnosis, but the oncologist and the GP had me on some form of chemo. After a series of double vision events, brain scan, two different ophthalmologists I saw a neuro and got a tensolin  test and finally a thymo operation. I needed to have a coumadin window for the surgery and developed another DVT that hit my lung. They installed a filter in veins and the coumadin held me steady.

    Along came the covid shots and the caution lite went on for me along with my GP. I elected NOT to get JAB and others around did and clotted up and died. These people had had mini strokes and survived. My sister older than me was one of them. She got covid or so it was said clotted up w/o JAB and died. I got the “O” covid and now the symptoms of tiredness and some double vision is starting. It is different in that with one eye covered I see a crazy split vision that comes and goes in both eyes, going for eye exam.  My INR is kept therapeutic range. 2-3 monthly. always asked re MG symptoms and as far as I can tell NONE. Never had cellcept, don’t think IVIG yes on prednisone. Had Plasmapheresis no effect. Thymo did the trick for me.  My wife also had omicron she is tired but not as much as me. What I can say is it is all the time sometimes. Different than anything I have felt thus far. I am glad I did NOT take the JAB.

  • Thomas Lee Clark

    Member
    May 12, 2022 at 9:46 pm in reply to: Sex and MG

    We have been in abstention since my last inguinal hernia repair. My wife said I wore everything out! The primary doc said I should not expect very much at 76 years. Now, it all DEPENDS!! I am reluctant to use the word REMISSION. However, since my thymo I have had other work done and None helped my sex putt. We sing an old song from childhood, “Precious Memories, how they linger” At present I am alive and just barely “Kickin”. It is surprising the number of Doc’s who miss MG. I learned of MG by watching a Ben Casey program. Back in the 60’s. I read several of the posts and I must tell all my eyes are fine and  my  mind functions somewhat well. I just say WOW and that is it. It all comes down to a song. “You’ve Got to Accentuate the Positive, Eliminate the Negative and don’t mess with Mr. In-between.” One More Song. Doris Day, Que será, será Whatever will be, will be.

  • Craig in my opinion and knowledge has a good handle on the MG life. All I have are opinions so I will tell you that this is a great place to connect. No cure but my thymo worked like a light switch. Glad you had an eye-guy that recognized asap. and a good neuro is wonderful.  Stay connected with this MG group. Most all are more knowledge since I was first diagnosed not much in fancy drugs early on for me. Try a patch over your eye and get used to letting your brain figure it out. Another worked for me scene.

  • Thomas Lee Clark

    Member
    March 2, 2022 at 10:51 pm in reply to: Anybody experience swelling in the legs?

    I was on 70 mg prednisone every other day. I wore compression socks and when possible kept my feet and legs elevated. Dr. wrote a script to my work as a condition to return that I be allowed to prop my feet whenever possible. My ankles would often ooze lymphatic fluid when I was on my feet too long. I also had a rounded prednisone face.

    The diplopia double vision was a problem  driving. I wore a patch and very quickly adjusted to drive with one eye. Traffic barrels converging was a problem, no depth perception. I could not play the piano after the eye patch but I could not play the piano before the eye patch either.

  • Thomas Lee Clark

    Member
    February 26, 2022 at 2:05 am in reply to: Intimacy, Sexual Relations, and Myasthenia Gravis

    At 76 what can a guy expect. Those that say they perform alright reminds me of locker room talk. My Doc knows all I have gone through and agrees. I could look at my beautiful wife when under the influence of MG and saw two of her. Not bad. She I suppose looked at me and saw only one walleyed, chocking mess holding my head up with my thumb under my chin. I have seen guys with arms and legs missing. I too have been blessed. I was cured after thymus, had good productive years, now just growing old. That is life.

  • Thomas Lee Clark

    Member
    February 26, 2022 at 1:48 am in reply to: Thymectomy With or Without Thymoma

    I had a completely healthy Thymus before and after thymectomy. Lab tested. From the operation I have had no symptoms. After covid (no Vax) I had recently about 10 minutes of diplopia went back to bed woke up vision OK. Doctor was neither surprised nor alarmed. I was both when it happened and pleased when it cleared. The only symptom after my operation. I did receive IV of antibodies after positive test and before double vison episode.

  • Thomas Lee Clark

    Member
    January 21, 2022 at 9:11 pm in reply to: MG Dentistry Precautions

    Not Just Dentists but every dr. or specialist you may visit needs this info. The Nephrologist now has this flagged on my records. I thought he knew.

     

  • Thomas Lee Clark

    Member
    January 21, 2022 at 8:33 pm in reply to: Ocular MG – Hacks, tricks, tape, etc?

    Butterfly bandaids, strip wound closure. I have a friend that uses them all the time. My skin is so oily nothing sticks. The pirate patch was un-nerving. I got a disk from eye doctor that affixed to my glasses frame. My good eye took over on focus.

  • <b>I tested positive dec 7 2021 and rcv’d iv antibody cocktail 13 Dec. Never lost taste, smell, no fever, Oxy level stayed low 90’s with COPD. Had cough, Rales in lower lobes and bronchial phlegm. sore neck muscles. Took all over counter remedies. Tired all the time and sleep. My wife also had the cocktail but she was much worse, so I nursed her. She had fever, headache body ache like flu symptoms. We are both through and we think we were exposed at the same time. I woke up Wednesday morning seeing DOUBLE which lasted about 3 hours and I took another sleep, woke up and my vision is back to normal. I never had the shots. Since the thymectomy never experienced any MG symptoms, first time. Perhaps this episode was a reminder for how blest I am. The covid was nothing compared to gMG I had. MG is bad but I listened to some vax shot reactions and one girl was on a feeding tube with little hope. An eye patch is small thing. I could drive one – eyed but the choking and gagging to clear my throat while necessary, made many at the table ill. I made one engineer recoil when he looked at me while eating breakfast on a business trip we took together. he did not know about my eyesight. Funny stuff happened all the time.</b>

     

  • Thomas Lee Clark

    Member
    January 3, 2022 at 2:07 pm in reply to: End of Year Reflection

    Without a doubt, I am thankful for this site. Until finding this “Blog” I spent years wrapped in my own experiences not actually knowing these fellow travelers were present with me at least in spirit. For that I am appreciative.  From reading these experiences and the vaccines for covid and learning of a few of what I felt was a flashback to my MG symptoms and the fear of those things returning because of another vaccine added to the many I have had from the military. Some were easy, some I really got a severe reaction.

    Because of this fear of a monster returning, I with my doctor decided to forgo the shots. As it will be My wife and I both tested positive and, on this side, we have no serious symptoms. At my present age of 76, COPD, prediabetic, and of course my previous general MG and success of thymectomy we felt the chance was worth taking.  I never received a flu shot and When I came positive the doctor was ready with an IV with another fancy name, but I trusted him, and other than tired, unscathed. Thanks again to this group.

  • Thomas Lee Clark

    Member
    October 23, 2021 at 4:18 am in reply to: Healing Trauma Despite MG Distraction

    Jodi, I have tried to follow your journey and I think you are remarkable. Keep us informed on your thymo. Sure hope your outcome is like mine. No symptoms but everything that comes strange halts my breath, especially my vision. Good luck to you and God bless and keep you.

  • Thomas Lee Clark

    Member
    October 23, 2021 at 4:06 am in reply to: Disclosing Your MG When Applying for Jobs

    <b>The onset of my MG was while I was active at work with some other issues with my blood and cancer scare. The company doctor who I only saw from a scheduled hearing test asked me how long I had MG? She knew me from other acquaintance and she spotted the problem. The optho and GP did not know and I was given a test for brain tumor and went to Neuro at the university. Not one time was my employment in jeopardy. My GP wrote my supervision that I could come back to work if I could to keep my feet elevated. Each of us in that office were “specialists” we knew our jobs, we could run a bluff and we would loan out to other departments to help.  I got a new boss and she later told me when she first saw me with my feet propped that she was going to work on that problem.  She figured, as she told me, she could not do my job nor the other odd-balls that was in her group so she just let us do the work. I somewhat knew my limits and there was always someone around to help me. I was giving a presentation and my mind went blank. That was when I was heavy on steroids and whatever else. I was also much larger in frame at 6-3″ 260# weak as cat but still nobody called my bluff. After my thymo op I retired and went into other work. Most maladies are now age related. My mind goes blank quite often but my wife says I am a handsome old man. My Doc tells me each monthly visit, no flu shot and no jab. “Don’t let-um skate ya off the pond!”</b>

  • Thomas Lee Clark

    Member
    September 22, 2021 at 10:02 pm in reply to: Let’s Not Discount the Effect of Ableism on Our Emotions

    I always tried to hide these things. Especially physical inabilities. My elderly aunt lived with us at the time and gave no quarter to pikers and she would speak her displeasure. I tried to keep up the front, worked every day and came home exhausted only to hide in the garage in a lawn lounge chair waiting for darkness when my eyes could relax more.  Glad those days are behind after my thymo operation. ALMOST NORMAL. 

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