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Hello!
My ID name is “taxidriver”. I chose this because in 1970-71 I was a helicopter pilot in Vietnam and among my many duties, I “taxied the boys to work” as I like to think about it today.
I’m often asked about my MG problem, when it was diagnosed and more importantly to me, when it began and in my case, the very first symptom actually happened about 6 months after I arrived in Vietnam. This symptom was swallowing issues and because of the difficulty I had with it, I began at that time to ALWAYS have a beverage available whenever I ate anything to “wash my food down”. At the time, I thought I was dehydrated and for the next decade continued to follow that regimen.
In the early 1980’s I noticed a frequent problem with holding my arms above my head but basically, I ignored it thinking I was out of shape.
In the early 1990’s, the swallowing problem began to worsen and I mentioned it to my regular family doctor; again to a gastroenterologist, and again to another physician. Over a period of about 3-4 years, two swallowing studies were done and nothing was found and I was told to drink more water. So, I did. In the meantime, I mentioned this problem in casual conversation with two more physicians.
About a dozen plus years later, the swallowing problem persisted and another series of swallowing tests were done and the end result was to drink more water.
In 2011, I was recovering from back surgery and while reading one of James Michner’s novels, all of a sudden my vision went double. Three days later I had a followup with the neurosurgeon and mentioned the vision problem to him. He did a few hand tests and suggested I may have MG and recommended I see an Ophthalmologist and a Neurologist. Before I could get these appointments scheduled the swallowing problem got very bad and I was unable to swallow my medications forcing me to crush them and mix with applesauce or yogurt in order to get them down. I also encountered some choking on certain kinds of foods such as crackers, dry meats, etc.
A month later, I was able to get the appointments suggested by the Neurosurgeon. The Ophthalmologist suggested I get an eye patch and diagnosed diabetic retinopathy since I had Type II diabetes. The Neurologist did an ice test on both eyes and concluded I probably had MG, ordered an AChR (anti-acetylcholine receptor antibody) test that came back “very high” and ordered a prescription of Methotrexate which I did not want to take so I immediately went to see an Ophthalmologist at the V.A. Medical Center near me. He sent me to the lab for another AChR test and called me that afternoon confirming the diagnosis. He then ordered a prescription of 60 mg Pyridostigmine @ 2 tabs/day and scheduled me to see a Neurologist at that facility. A week later, I became a patient of this Neurologist and still am to this day.
Because of the severity of my case, my Neurologist ordered IVIG infusions and I receive them every 4 weeks and have been for 13 years, now into my 14th year. My Pyridostigmine dosage is 3-4 per day and I average taking them every 5 hours. Due to stomach distress, I always eat something right before I take each tablet.
As it has turned out, I am an Agent Orange affected Veteran with 5 autoimmune diseases. In my opinion, the worst of the five is the MG. It affects everything I do the worst of which is the double vision for which I wear prism glasses. Four years ago in 2021, my vision worsened with the droopy eyelid and I stopped driving a car for one full year. Being an insulin dependent diabetic, I decided to ‘get better’ and on my own plan, I completely changed my diet by giving up all sugars and sweets, chips and breads and now eat a low carb diet. This paid off but took one full year for the metabolic process to occur and a year later, I was able to resume driving again and continue to do so today.
In my case, I’m an insulin dependent diabetic on an insulin pump. I am very diligent about my diet because for me, giving up sweets can’t compare with losing my vision. During that year I wore special frames for my prism glasses that were fitted with a “hitch”, a metal wire on each side that helped to hold up my eyelids. A company in Mississippi makes these kinds of frames and they were of immense help for me but they were uncomfortable. I no longer wear them now but must wear the prism glasses else I see double.
I have often wondered if non-diabetics who suffer MG and have double vision problems would see the same results that I’ve had from my change of diet. To my knowledge, no study has been done in this regard.
The next worst symptom that I have is muscle weakness but being diabetic, I also have peripheral neuropathy which is secondary to the diabetes. With this problem I sometimes have difficulty holding my head up and when this happens, I sit in my chair and rest my head against the headrest for several minutes or longer depending on how I feel.
I try to walk as much as possible on a daily basis but this varies. A few years ago I was able to walk for an hour each day for the first two weeks following my infusions but now, I’m down to 20-25 minutes/day.
With the infusions, I often feel ill for 1-2 days following each one, a bad headache is normal and sometimes flu-like symptoms occur. After a couple days, I began to feel better again and that continues for another two weeks and then I began to feel run down again.
A side effect I have with the Pyridostigmine is very significant excess saliva and runny nose for which I’m often suspected of having a cold but I know the cause is the medication.
I hope my introduction to this group may help some of you in understanding your condition. In my case, I believe that exposure to chemical agents is or may be linked to having developed it. I read a study several years ago about farmers in a European country who were exposed to certain chemicals seemed to have developed MG consequently, for me, I remain vigilant whenever I am outdoors where certain chemical spraying might be occurring and thus avoid the possibility of aggravating my own situation.
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2 Replies
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Hi Taxidriver. I just read your post and identified with much of it. My MG also started with swallowing issues, but I was diagnosed quickly. The Dr thought I needed my esophagus stretched and when he saw that wasn’t the problem, he drew blood and sent it to be tested for MG. I’ve had IVIG infusions and currently on Vyvgart infusions. The prednisone and generic Mestinon do little for me. I’m currently flaring due to a bout with pneumonia. My vision is really bothersome right now. Hope you are doing well and hope I will be soon.
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Hi TaxiDriver and welcome to the Forum. …
I ENJOY you Handle, as I am a HUGE fan of the show “TAXI” from back in the day. …
I haven’t been here very long myself, but believe the shared information from others like yourself, help all of us suffering from MG. …
One thing I noticed while reading your story, was about the excess salvia and runny nose while taking Pyridostigmine. …
I also have both inflictions and I am seriously thinking of investing in Kleenex. … lol
Again, thanx for you share. …
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