Thomas Lee Clark
Forum Replies Created
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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 humor. When I sincerely wondered if things were just in my head, he dispelled those notions. Once when spilling out all my maladies he asked me if my teeth itched? Then we both laughed. On one office visit he personally wheeled me to my car in a wheelchair. I was green with a blocked bile duct sludge that he treated. There was not a stone but he is a wise man. Actually his name is Wise. I refer to him as doc “Won-mug” from “Ally-Oop” days. I think you need a mechanic you can trust personally. He knows and remembers my right saphenous vein which is still clotted and always painful and he knows Mazithra Greek goat cheese. Â
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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 after the Jab. At my age and the severity of my MG, honestly I would rather die than have this MG come back. Even with the coumadin I still have clots. Totally my choice. For me the jab is <b>tantamount to Russian roulette with one chamber empty.  I went to India without the malaria shot because the quinine was more risk than the disease.</b>
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<b>I do not drink alcohol. I come from a long family line of alcoholics but I love the taste and smell of beer. Bud now has a zero which is better than anything I have tried. </b>
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I have deduced from this blog that each case is full of similarities “all the time, sometimes”. I cannot mention enough how pleased I am to have found this blog. Now I know I just may be human, not necessarily normal. Now I have ammo for older age and MG stuff. I was never lazy, now I am. I even put off procrastinating. Dave Haw, there is no such thing as a “Readers Digest Version” or keeping a long story short. Look how we go on. Leave happy tracks for others to follow.
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The “B” thing did not work, the type reverted back after posting. Selected the visual block top right and then B for bold and my result may have changed.
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I read with great interest regarding the robotic thymectomy. My removal was manual and by orders of the neuro to the surgeon, “get every speck” even that fats that the gland is cradled in. I programmed industrial robots and the kids coming up were better at it than I was, My wife has had both knees replaced robotically so I am not averse to technology but my success with the thymectomy was so wonderful and my recovery so complete I am heartsick that removal does not work for everyone like it did for me.
On a final note. at the top left corner of the typing box is a BOLDED letter B. If we could all remember to use bold the this thread would be easier to read! Especially for me. The light print on white or blue background is difficult.
I told my doc that I would know when I was back to normal would be when I could pick up my end of a piano and walk off with it. I did it! Then I never done it again. My doc said “Here’s your sign” -
Hilda Edwards. I had an on open chest thymo extraction. When I came out of the anesthesia I was what I considered HEALED. Another patient at my doc was not as blessed, it did not work for them. My thymus was not sick enlarged or anything except my neuro doc pressed by my wife scheduled it. Hilda, keep the faith and press on. With new drugs on the horizon there may be something that works for you. What ails me now may not be related to MG. There may be some residual effect of nerve damage and weakness but I can see 20/20 corrected and both eyes see the same color. Don’t stop and don’t give in to despair. My vision got so bad I could not stand light when this first came on. The ophthalmologists did not diagnose and sent me to a neuro who done the brain tumor thing and other searches I do not remember but she quickly turned to the MG and kept her focus there. I am thankful for her and for this site to learn more from others that I never knew.
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Janelle, you sound like me only use a different and better way of expressing it. As peoples we make judgements and one of mine is seeing and trying to understand our commonalities. At 76 years now and what my journey has been, I realize how blessed I have been for a dead man. Over the doorway of my “Cave” I compounded a saying for my benefit when I get the downer; “Have you considered my servant Job. Though He slay me, yet will I trust him.” There is one major difference though. I had the best neuro doc. A little 5 foot Syrian gal that shepherded me through my diagnosis and the chain-smoking surgeon who whacked out my thymus. (He wanted to go for it the day I first met him.) By the way, I quit drinking beer. I now freeze it and eat it. Finally, Getting old ain’t for sissies.
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Janell, I owe you an apology. We have all taken lots of meds and steroids have caused me to get unsettled and my doc always asked me how my mood was. I worked hard just to keep balance in my life. So I often sing the Mary Poppins song ” a spoon full of sugar makes the medicine go down, in a most delightful way”. What I said was aimed at me, not you and I am sorry if you took my levity wrong. My assumption is you too have suffered with this disease and what has helped me is to laugh. I think we would like each other if we give it a chance. This site has helped me immensely. Let’s compare notes!
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Janell, A spoon full of sugar makes the medicine go down. This site has been a Godsend for me. I am reminded of the parrot that kept using bad language and his owner admonished him if he kept going he would stick him in the freezer. After a short sentence in the freezer he came out very quiet and subdued. He politely asked his owner, “What did that TURKEY say?”
I would get angry at someone when hopped on steroids and wanted to hit them but there were two of them and I always swung at the wrong one and it was always his TALLER TWIN. -
Douglas, you have, in my opinion a great grasp on this fight. It does seem to be a very individual disease. The word ptosis surfaced for me again, I forgot the word but not the effect. The pirate patch was nerve wracking touching my face, the disc affixed to my glasses was tolerated. Convergence and depth perception took some adjustment. I learned when at a traffic light to put the car in park. I would fall asleep and relax off the brake and creep into the intersection. The horns awakened me. At a light someone behind me would toot their horn and I would snap to and drive off. Something like texting at a traffic light.
I read in another post after a thymo taking the covid vaccine where the MG returned in full. My GP has guided me away from this as well as the flu vac. The clotting and stroke fear is daunting. -
Craig, What a great outlook. I certainly enjoyed your post. Jodi, your post statement, “something we must practice in moderation. It is super to use our voices to speak up for causes we support. Still, at some point, we need to accept that some people are unwilling to listen or be open-minded to change.” Craig, J have a shot record saved from the military as a keep-sake. Most I had no idea what they were for, I just got in line. Some caused a reaction, some hurt for days. I was even exposed to agent orange but never carried one of them rifle-guns, my weapon of choice was a screwdriver.
I have had kidney stones, appendicitis, and cancer but nothing caused fear and concern for the unknown like MG! I am a control freak and being completely out of control, been lead around as an invalid makes me determined not to be skated off the pond. Life for me is a bowl of olives and I spit out the pits. Never wash my hands unless I cannot hold my sandwich. Am I resistant to change? Don’t know, don’t care. Stay on the sunny side of life. -
Sorry, I did not have a classification of which I am aware. I am now 76 years old feel really good. I was 57 when I had the surgery. For ME it was a miracle. My GP, who is on top of this and knowledgeable has kept me under close care. Francis, you have everything to gain by the surgery. All I can admonish is be certain the knife person gets every minute speck, nothing left of the gland. Not my words but the neuro doc was adamant about this aspect. My quality of life postop is something I can hope for all MG sufferers. Adding you to my prayer list, and your docs. I do have the stories don’t I?
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Most of you are beyond my league! One of my many trips to the er I had a squad medic ask if he could start my IV for his training. Always a hard stick, he worked on both hands then got his supervisor who come up dry, then a floor nurse came over and zip zop she rang the bell on my wrist. When I complimented her she promptly told me as she pointed to another curtain that she had just failed over there. I always try to tell the phleabo to dig for it. It really doesn’t hurt as much as the idea hurts. Once while installed a young nurse failed to stick and she really felt bad, to tears. They called for who I dubbed “BIG NURSE” she was a 5 foot nothing smart cookie. She had more hardware in her pockets she rattled as she came into the war zone. I have no idea what she carried in her smock but she put a warm compress on my elbow, cuffed my arm and my IV arm was changed for the next cycle. One thing I would never allow was to be stuck in either hand between the little and ring finger. That vein became plebitic very quickly. My INR checks are done 3 of 4 now with a finger stick like a sugar check. One is always drawn for a lab INR and the butterfly is used. The veins roll but very seldom miss, follow the yellow brick road. The scar tissue is softening with less use.
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I am NOT on any maintenance treatment or MG meds. I am always asked by the primary doc and nephrologist regarding MG symptoms. The primary has had other MG patients and he remarked where one had the thymo surgery without the recovery I had.
My recovery is remarkable. From the onset of diplopia and over a three year period it was a physical roller coaster. I still worked in my engineering position but chose to retire and went into dark times. I was still active as a minister through the entire illness. After the surgery I had several life changes which included driving 18 wheelers coast to coast for two years and came back to ministry full time and quit driving. I still maintain my Commercial Driving License and have done pinch hit for companies who need a driver. I can and have passed physicals to drive school bus. I have not taken a flight physical, I was a pilot prior to but that physical is very stringent so I did not try. Life goes on and I feel very blessed. I have extreme difficulty walking or standing and while some may be age related I must be careful falling which started during my MG years. After the thymo I had an embolism and had a Greenfield filter installed in my vena cava to catch clots from DVTs. My increased interest is because of covid and the vaccines and the fear of compromise. I traveled to India to work in and orphanage and could not take the malaria meds. My primary doc jealously guards what I do, especially flu shots and now the covid stuff especially the clotting which has occurred. What a ride! Sorry I rambled. -
Jonathan, what a story. My excursion was mild in comparison. This to me is why this site is so valuable. I never heard of IVIG but I never understood what the “artificial” plasma was that was put back in. My greatest problem was a massive leak of blood onto my bed. the cancer type drug may have been Azathioprine??, I do not remember but could safely be administered for only a year. I feel so blessed not having the absolute debilitating symptoms others have had. This disease must be like fingerprints, none other set is alike, only similar. I had a gamma-globulin shot in the military, do not know why butt it hurt. I received many shots on world-wide status. Now I am very careful what I take, including a flu shot and especially quinine. Pulmonary embolisms are painful if you live thru the experience. Praying for you brother.
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1. Pre. Weakness swallowing, chewing, terrible double vision and walking. I had clotting at the same time which may not be related to MG. I had to hold my head up with my thumb.
2 13 Pheresis treatments, none of which made a difference. The Nurses remarked how some were almost immediately renewed. That never happened for me. Mestinon was a bust, prednisone 70mg every other day worked so I could go back to work and a cancer drug prescribed by the neuro.
3 Surgeon did open sternum type. still can feel the wire. Thymus was normal but I awakened from surgery healed, like the Pheresis nurses talked about.
4. around 2 years. and now over 20 years no same symptoms. When I get weak it does frighten me and my last pair of glasses which were made wrong gave me double vision. The culprit eye was on the opposite side even as I turned the glasses upside down. It was my right eye over which I wore the disk. Really scared me. -
What a magnificent find for me. This site helps me understand I was not totally mental. Heat and humidity sapped me and still makes me weak after a shower to the point I take a cool shower always and rest afterwards. The sun does the same. Actually, thinking about exercise wears me out. I am thankful for how well I feel now.
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Neuro. I had one, luck of the draw and at OSU hospitals clinic. I consider here the best and sincerely wish everyone could have her. A little 5 ft. Syrian doctor that was great. (Dynamite comes in little packages) She was knowledgeable and thorough. She recommended, INSISTED on THE surgeon. The tensilon test was presided over by her as a reluctant doc hesitated. I am a big man and she would pull on my arms and push watching for my fatigue and she was un-phased. She started with MRI for brain tumor and carried the ball from the optho doc who sent me suspecting MG. My wife pressed her for the thymectomy rather than wait. She left OSU and moved to Children’s Hospital. My insurance would not cover her there and I never went to another neuro. When I had the pulmonary embolism she appeared and told me to do what the other docs told me to do.
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It is comical how much I relate to many of the things mentioned on these threads. The Neuro doc never pushed off anything and I was always suspect that I was overdoing all related to MG. I had and still have pain in my feet. Neuropathy drugs have not worked and walking is still painful in the bones of my feet. A doc at Cleveland Clinic said I needed therapy to learn how to walk. He had not seen my medical records prior because they became lost. After seeing them later he called and asked me to return. t my age everything is arthritis! Ha. It is intuitively obvious I do not know or understand what I do not know or think I know. I am thankful and blessed.
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This is interesting. I have been to optho people with watery eyes, especially left eye constantly. I take no myasthenia drugs now and I have put up with it. The eye doc wants to fix a deviated septum my GP says no. Other than aggravation I use eyedrops and compresses and wipe my eyes. Whether it is related to mg is a question I have not considered. I am constantly asked on doc visits how my MG is doing? do I have any symptoms and never considered this a symptom.
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Kenneth, I don’t smoke, chew or drink liquor. Most of the recent and newer meds I have never taken. Sunlight, especially if I wear dark clothing, saps me. A shower too hot does the same. I rest until I recover enough to go ahead with activity. This seems to be the only residual I have after my thymo about 20 years back. Stay the course.
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I had this falling happening too regularly. Climbing stairs was arduous and even burning leg muscle pain to the point I stopped still until it subsided. If someone was in the stairwell with me, embarrassed, I would push on to the top, let them pass and go on. Going down was different. Turning to the left on the landing often resulted in falling against the wall until I held on to the rail. I still have a slap-foot and catch my toe but old people just do not pick up their feet. Since my thymo I attribute this to neuropathy and senility. I do want to add how grateful I am to have found this forum with info. I really thought and have said I must be a hypo, now I realize I am slightly mental but the choking was for real. I would not eat with strangers because of the embarrassment from the funny noises I made trying to swallow.
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Ari, I appreciate this outlet and the education I have received since finding this group. I have not been in combat, I served during Vietnam in theater. Thanks for your service. I got every shot that was needed for world-wide status. I am now taking anxiety meds but after the MG was full blown general. I worked during my most difficult times and retired early after the thymectomy. Still have blood clots and always on-guard for other symptoms. Although I have not had the vaccines the doctors I see leave the decision to me, especially with the phlebitis, DVTs, pulmonary embolism after the thymus operation. Normal is a setting on the dryer, says my wife. I know quickly when I do not take my anxiety meds. Hang in there and don’t let them skate you off the pond. When my MG fired up I was good. I could see twice as much as others and different colors looking at the same object. I spent many hours sitting alone in the dark. Since my “recovery” life went on. I drove 18 wheelers coast to coast for several years. My Timex watch is still ticking. Keep the faith brother. Thomas Lee Clark