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Thomas Lee Clark replied to the topic Thymectomy-Above Age 50 in the forum Healthcare and Myasthenia Gravis 2 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Blue Light Eases MG Eye Weakness in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 2 weeks ago
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…[Read more]
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Thomas Lee Clark replied to the topic Blue Light Eases MG Eye Weakness in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 10 months, 3 weeks ago
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.
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Thomas Lee Clark replied to the topic Saying No to Participating in Clinical Trials in the forum Myasthenia Gravis Research, Scientific News, & Clinical Trials 11 months, 4 weeks ago
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 t…[Read more]
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Thomas Lee Clark replied to the topic Have You Had COVID-19 with Myasthenia Gravis? What Was Your Experience? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year ago
#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.
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Thomas Lee Clark replied to the topic Question about IVIG and blood clots. in the forum Healthcare and Myasthenia Gravis 1 year ago
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…[Read more]
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Thomas Lee Clark replied to the topic Sex and MG in the forum Relationships & Social Life with Myasthenia Gravis 1 year ago
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,…[Read more]
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Thomas Lee Clark replied to the topic Very new to my diagnosis. A bit confused and would like anyone to weigh in. in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 2 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Anybody experience swelling in the legs? in the forum Healthcare and Myasthenia Gravis 1 year, 3 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Intimacy, Sexual Relations, and Myasthenia Gravis in the forum Relationships & Social Life with Myasthenia Gravis 1 year, 3 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Thymectomy With or Without Thymoma in the forum Healthcare and Myasthenia Gravis 1 year, 3 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic MG Dentistry Precautions in the forum Healthcare and Myasthenia Gravis 1 year, 4 months ago
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.
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Thomas Lee Clark replied to the topic Ocular MG – Hacks, tricks, tape, etc? in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 4 months ago
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.
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Thomas Lee Clark replied to the topic Have You Had COVID-19 with Myasthenia Gravis? What Was Your Experience? in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year, 4 months ago
<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.…[Read more]
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Thomas Lee Clark replied to the topic End of Year Reflection in the forum Hacks, Suggestions, and Tips for Living with Myasthenia Gravis 1 year, 5 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Healing Trauma Despite MG Distraction in the forum Mental Health, Self-Care, and Support 1 year, 7 months ago
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.
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Thomas Lee Clark replied to the topic Disclosing Your MG When Applying for Jobs in the forum Working/Careers and Myasthenia Gravis 1 year, 7 months ago
<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…[Read more]
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Thomas Lee Clark replied to the topic Let’s Not Discount the Effect of Ableism on Our Emotions in the forum Relationships & Social Life with Myasthenia Gravis 1 year, 8 months ago
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…[Read more]
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Thomas Lee Clark replied to the topic Finding a Primary Care Doctor to Oversee Myasthenia Gravis in the forum Healthcare and Myasthenia Gravis 1 year, 8 months ago
I think I responded to this on another post. I have a primary doc who hung the moon. Without his guidance my life likely would have been over. I tell him he is “pilot in command”. He was there at every turn even dragging in his PDR which was reassuring to me. He was surrounded by people that were known by him. He was an ER doc and has a sense of…[Read more]
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Thomas Lee Clark replied to the topic COVID-19 Vaccine Booster Shot and Myasthenia Gravis in the forum Coronavirus (COVID-19) and Myasthenia Gravis 1 year, 8 months ago
My last doc visit (every month for INR check for anti-coagulation, instructed me again not to get the flu shot and or the jab. I know those who have gotten the jab including my sister, nephew and 2 other older friends who clotted, stroked and died. My nephew was in his fifties, sis and friends were all older on anti-ags. All died within a month…[Read more]
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