Bill Suphan
Forum Replies Created
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I always had a very active life. I graduated from college with a double major at age 20 and shortly thereafter went to USAF Officer School and pilot training. Flew b oth prop and jet aircraft. When I got out I got my CPA certificate and was CFO of a public OTC company which I helped take public. I played a lot of golf and was an avid bowler and won several tourneys. When retirement came at 65 I was figuring how many days per week I could afford to play golf, etc.  Then almost exactly when I retired I came down with symptoms and, as often is the case, I had problems finally getting the MG diagnosis. When I asked if the test could be wrong I got a laugh and was told a really high number on whatever test is used. I was told there was no doubt. The retirement I had dreamed about was down the drain but I finally accepted that and have adapted and am giving my step son my clubs since he has taken up golf. I have gone thru several medications with each having some positive effect. I am on Ultomaris (sp ?) and have had very p0sitive results and I don’t mope around and feel sorry for myself having seen so many others suffer much more than I. Sorry for the length of this.
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No problems around my birthday. If you don’t overdo it the day should be almost like every other. On some holidays when family or friends come over I have to be up and alert for a little longer than I like and that tires me out a lot causing me to rest a lot the next day. It is hard for me to count on myself for preplanned events out of the house and on a couple of occasions I have had to do last minute cancellations which is hard for others to understand. That can cause stress.
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Just a cure. I can take it from there.
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My Neuro changed me from Solaris to Ultomiris a few months ago. I have noticed a positive effect that seems to take a day or two to kick in. My wife has noticed that I seem to slow down a bit as I get a week or so before my next dosage. Infusions are every 8 weeks and are done in my home. I think I feel more active than I did on Solaris. Not a huge amount but some more active. My experience is obviously positive.
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Not long after I was diagnosed I had a flare up and my wife took me to the emergency room. It was very crowded and I thought the wait would be forever. After I signed in and noted that it appeared to be an MG flareup I went into the waiting room. People were complaining that they had been waiting for several hours, etc. Within about 10 minutes an aide brought in a wheel chair and called my name and off I went. I had not realized the seriousness of my rare condition until that time. MG must have appeared on some list of life threatening conditions and it triggered this response. I guess that was when I realized how rare MG is.
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Getting a proper initial diagnosis is often frustrating, confusing and dangerous. Funding to put MG in the minds of medical professionals when they are first approached by a patient with MG symptoms would alleviate a boatload of problems.
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I had a port put in and had no problems with it. After about a year or so they decided to take it out. I don’t recall why it was removed. It was put in because I was considered such a “hard stick” when it came time to get infusions. I now get IVIG and Ultomiris infusions and only rarely have serious problems getting “stuck” now. I do drink more water before infusions than I used to.
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I enjoy a good cigar every few weeks but I have never smoked aside from that, especially cigarettes. When I was 9 years old I had pneumonia so I have always been protective of my lungs. It is difficult for me to get my head around a linkage between smoking and the onset of MG unless the smoking has enough of a deleterious impact on the body to accelerate the onset of MG or even cause it.
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No travel plans, so no problems anticipated. Have IVIG plus a hearing test next week however.
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My GP first diagnosed my MG which is probably very lucky for me. He referred me to a Neuro who ran some tests and due to the high scores on tests referred me to a well known specialist who is justified in being well known because he is the best. Each time a suitable new advanced treatment becomes known he gets me to the front of the line. I am just doggone lucky. I have had a couple of times of being hospitalized and have had super doctors looking at me for gastro, cardio or whatever is appropriate. I recently had a check up from my GP and he looked down the list I had for him of all my meds and physicians and he said he was amazed by the quality of the docs on my list. Obviously I am able to rate my MG care as the tops.
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I have learned to get my shower out of the way late in the day before the appointment, schedule my appointments for first thing in the morning, lay out everything I will wear, etc. I also leave earlier than I used to for the appointment so I can get a parking spot and get in the office and relax before I see the doctor. I am, like most MGers, more alert and less tired early in the day which helps make the appointment more productive. One of the most difficult things for me is getting shoes and socks on and I wear slip on shoes and just struggle somehow with a device that helps with putting my socks on. I look back now and realize that I have learned a lot in this part of my life dealing with MG.
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I have learned to get my shower out of the way late in the day before the appointment, schedule my appointments for first thing in the morning, lay out everything I will wear, etc. I also leave earlier than I used to for the appointment so I can get a parking spot and get in the office and relax before I see the doctor. I am, like most MGers, more alert and less tired early in the day which helps make the appointment more productive. One of the most difficult things for me is getting shoes and socks on and I wear slip on shoes and just struggle somehow with a device that helps with putting my socks on. I look back now and realize that I have learned a lot in this part of my life dealing with MG.
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I have learned to get my shower out of the way late in the day before the appointment, schedule my appointments for first thing in the morning, lay out everything I will wear, etc. I also leave earlier than I used to for the appointment so I can get a parking spot and get in the office and relax before I see the doctor. I am, like most MGers, more alert and less tired early in the day which helps make the appointment more productive. One of the most difficult things for me is getting shoes and socks on and I wear slip on shoes and just struggle somehow with a device that helps with putting my socks on. I look back now and realize that I have learned a lot in this part of my life dealing with MG.
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Ruined my retirement.
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Double vision while driving with drooping of eyelids shortly thereafter. I mentioned to my wife that the left side of my face was drooping and a little numb. I went for tests to specialists who came up with various answers none of which were accurate despite their best efforts. I had an annual physical with my PCP who had me follow his finger with my eyes and then stare at his finger which he held up high until my eyes finally failed. He said I might have MG and sent me to a neurologist who ran tests and confirmed his diagnosis. This is probably akin to most others in terms of what they have gone through to find they had MG.
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The Lady Killers   It is a British comedy. Real low key with a surprise ending. Superior droll script and acting.
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Most proud of losing a lot of weight which alleviates pain and can, on most days, result in being a little more active. Among my medicines are Solaris and IVIG and I have continued that with the Solaris now going on 3.5 years. A year ago or a little more I used a walker much of the time and had a wheelchair used at the hospital where I get my Solaris but now do not even use a cane. I am 75 now and have had some improvement over the year as is noted.
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I experienced trouble swallowing and keeping food down and was misdiagnosed as Acalasia after running some tests. I later started having trouble with my eyelids and seeing double. When I had some trouble with some of my facial muscles I saw my PCP who was the first to say Myasthenia Gravis to me. He referred me to a neurologist who ran blood test and told me I definitely had MG. She referred me to the area’s top specialist and I have had great treatment since then. It was at least 6 months from first symptoms to final MG diagnosis.
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Castle reruns, history shows that have several episodes, etc. Alfred Hitchcock reruns because they all have unexpected, ironic endings.
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I have a walk-in shower now which is very helpful. I also do not like to carry anything around with me and I use a walking cane the majority of the time I walk outside or go someplace. That is largely for balance. I use one of those cell phone holders with a strap that goes around my neck so that if I fall I can call my wife or someone else to help me up. I fell once and tried to dive for an easy chair but hit the side of my torso and I thought I had broken some ribs so I let myself down to the floor. Luckily nothing was broken but I was sore for about 10 days. We sold a vacation home we had that was three stories because I could not negotiate the stairs more than once a day, if that.
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I have walk in shower and find a hot shower reduces joint pain a lot. It does make me sleepy afterwards. I think a lot of that is related to moving around, etc. i.e. the exercise involved in taking the shower. Heat has not bothered me much since I was diagnosed with MG almost ten years ago.
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Thanks for the sound advice on having a “to go bag”. I will get one together and check it periodically for updating. I have been hospitalized three times since being diagnosed about 11 years ago.