Good news and bad news...
-
A couple of months back or so I mentioned I might be in early onset myasthenia gravis which is a form of muscular dystrophy. To be sure, some of the symptoms have been present for a number of years, which may or may not work in my favour. I had an EMG and two critical blood tests came back negative and slightly elevated. Because of those tests the neurologist effectively ruled out myasthenia, which is the good news. The devil is in the detail however. He referred me for a blood test to test for a specific faulty gene called PAPBN1. If present, that could explain everything as the diagnosis would indicate oculopharyngeal muscular dystrophy (OPMD). Curiously, it affects 1:100,000 in Europe but as many as 1:1000 in Canada. If the faulty gene is discovered, then OPMD is a slippery slope to all sorts of problems with droopy eyelids (which I have), slightly nasal and and slurry speach (which I have and can't be blamed, like Nagy, on too much gin!), weakened facial muscles (which I have some evidence of) and so on. I'll know in a couple of months whether the genetic "proof" confirms things. I'm hoping of course that the test comes back negative but at least if it's positive, then plan B can kick-in which involves some specific surgery but that's a future bridge I'll cross when it comes. The good news is that life expectancy is not affected. The waiting game means that having been exempt from one likely cause, another gopher has popped its head up. One by one, the neurologist will chip away at things until we know what it is and from there the treatment options can be discussed. I am fortunate though, as I must mention about a young lady who came out of the consulting room before I was called. She clearly had serious muscular dystrophy as she could not speak well at all and could only shuffle with a walking stick and she was pregnant as well. She reminded me of what's affected the former Springbok rugby player, Joost van der Westhuizen. They can do astonishing things in medicine now. While there is no cure for MD in all its forms, the symptomatic treatment has progressed well. Having "forgotten" our wedding anniversary last Friday, today's news for my wife was received with some pain. The positive side? I see no reason to alter anything I do and we'll deal with it as we go along. I will continue to laugh at things that make me laugh. The neurologist wants me to take my current medication and I asked him about possible side effects of which he mentioned increase flatulence was one. I've suffered from that all
-
A couple of months back or so I mentioned I might be in early onset myasthenia gravis which is a form of muscular dystrophy. To be sure, some of the symptoms have been present for a number of years, which may or may not work in my favour. I had an EMG and two critical blood tests came back negative and slightly elevated. Because of those tests the neurologist effectively ruled out myasthenia, which is the good news. The devil is in the detail however. He referred me for a blood test to test for a specific faulty gene called PAPBN1. If present, that could explain everything as the diagnosis would indicate oculopharyngeal muscular dystrophy (OPMD). Curiously, it affects 1:100,000 in Europe but as many as 1:1000 in Canada. If the faulty gene is discovered, then OPMD is a slippery slope to all sorts of problems with droopy eyelids (which I have), slightly nasal and and slurry speach (which I have and can't be blamed, like Nagy, on too much gin!), weakened facial muscles (which I have some evidence of) and so on. I'll know in a couple of months whether the genetic "proof" confirms things. I'm hoping of course that the test comes back negative but at least if it's positive, then plan B can kick-in which involves some specific surgery but that's a future bridge I'll cross when it comes. The good news is that life expectancy is not affected. The waiting game means that having been exempt from one likely cause, another gopher has popped its head up. One by one, the neurologist will chip away at things until we know what it is and from there the treatment options can be discussed. I am fortunate though, as I must mention about a young lady who came out of the consulting room before I was called. She clearly had serious muscular dystrophy as she could not speak well at all and could only shuffle with a walking stick and she was pregnant as well. She reminded me of what's affected the former Springbok rugby player, Joost van der Westhuizen. They can do astonishing things in medicine now. While there is no cure for MD in all its forms, the symptomatic treatment has progressed well. Having "forgotten" our wedding anniversary last Friday, today's news for my wife was received with some pain. The positive side? I see no reason to alter anything I do and we'll deal with it as we go along. I will continue to laugh at things that make me laugh. The neurologist wants me to take my current medication and I asked him about possible side effects of which he mentioned increase flatulence was one. I've suffered from that all
-
A couple of months back or so I mentioned I might be in early onset myasthenia gravis which is a form of muscular dystrophy. To be sure, some of the symptoms have been present for a number of years, which may or may not work in my favour. I had an EMG and two critical blood tests came back negative and slightly elevated. Because of those tests the neurologist effectively ruled out myasthenia, which is the good news. The devil is in the detail however. He referred me for a blood test to test for a specific faulty gene called PAPBN1. If present, that could explain everything as the diagnosis would indicate oculopharyngeal muscular dystrophy (OPMD). Curiously, it affects 1:100,000 in Europe but as many as 1:1000 in Canada. If the faulty gene is discovered, then OPMD is a slippery slope to all sorts of problems with droopy eyelids (which I have), slightly nasal and and slurry speach (which I have and can't be blamed, like Nagy, on too much gin!), weakened facial muscles (which I have some evidence of) and so on. I'll know in a couple of months whether the genetic "proof" confirms things. I'm hoping of course that the test comes back negative but at least if it's positive, then plan B can kick-in which involves some specific surgery but that's a future bridge I'll cross when it comes. The good news is that life expectancy is not affected. The waiting game means that having been exempt from one likely cause, another gopher has popped its head up. One by one, the neurologist will chip away at things until we know what it is and from there the treatment options can be discussed. I am fortunate though, as I must mention about a young lady who came out of the consulting room before I was called. She clearly had serious muscular dystrophy as she could not speak well at all and could only shuffle with a walking stick and she was pregnant as well. She reminded me of what's affected the former Springbok rugby player, Joost van der Westhuizen. They can do astonishing things in medicine now. While there is no cure for MD in all its forms, the symptomatic treatment has progressed well. Having "forgotten" our wedding anniversary last Friday, today's news for my wife was received with some pain. The positive side? I see no reason to alter anything I do and we'll deal with it as we go along. I will continue to laugh at things that make me laugh. The neurologist wants me to take my current medication and I asked him about possible side effects of which he mentioned increase flatulence was one. I've suffered from that all
Hope all goes well. At least you can fart in public and claim it is a medical condition. :) I know bad joke. :rose:
-
I wish you good luck, good health and the ability to deal with life's challenges. :rose: /ravi
My new year resolution: 2048 x 1536 Home | Articles | My .NET bits | Freeware ravib(at)ravib(dot)com
Thank you Ravi. I was thinking the reason why it's so high in Canada (1:1000) is that they have lots of cold weather and nothing else to do but inbreed. :-D
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
-
Hope all goes well. At least you can fart in public and claim it is a medical condition. :) I know bad joke. :rose:
djj55 wrote:
fart in public
Been there; done that, as they say. Only last week I was at Sainsbury's doing the weekly shop. An old woman behind me dropped a corker. So smelly in fact the check-out lady cast a brief look in my direction and I noticed it. I said, "no, it wasn't me." We both laughed as I gave a slight, almost imperceptible nod to my left. My word, did that old duck, hum or what?
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
-
Thank you Ravi. I was thinking the reason why it's so high in Canada (1:1000) is that they have lots of cold weather and nothing else to do but inbreed. :-D
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
-
djj55 wrote:
fart in public
Been there; done that, as they say. Only last week I was at Sainsbury's doing the weekly shop. An old woman behind me dropped a corker. So smelly in fact the check-out lady cast a brief look in my direction and I noticed it. I said, "no, it wasn't me." We both laughed as I gave a slight, almost imperceptible nod to my left. My word, did that old duck, hum or what?
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
-
djj55 wrote:
fart in public
Been there; done that, as they say. Only last week I was at Sainsbury's doing the weekly shop. An old woman behind me dropped a corker. So smelly in fact the check-out lady cast a brief look in my direction and I noticed it. I said, "no, it wasn't me." We both laughed as I gave a slight, almost imperceptible nod to my left. My word, did that old duck, hum or what?
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
Mom is getting up there in age (86) so when I take her to the store or a restaurant I have been noticing that people will treat her differently. Example: they understand when it takes her longer to get around (walker).
-
A couple of months back or so I mentioned I might be in early onset myasthenia gravis which is a form of muscular dystrophy. To be sure, some of the symptoms have been present for a number of years, which may or may not work in my favour. I had an EMG and two critical blood tests came back negative and slightly elevated. Because of those tests the neurologist effectively ruled out myasthenia, which is the good news. The devil is in the detail however. He referred me for a blood test to test for a specific faulty gene called PAPBN1. If present, that could explain everything as the diagnosis would indicate oculopharyngeal muscular dystrophy (OPMD). Curiously, it affects 1:100,000 in Europe but as many as 1:1000 in Canada. If the faulty gene is discovered, then OPMD is a slippery slope to all sorts of problems with droopy eyelids (which I have), slightly nasal and and slurry speach (which I have and can't be blamed, like Nagy, on too much gin!), weakened facial muscles (which I have some evidence of) and so on. I'll know in a couple of months whether the genetic "proof" confirms things. I'm hoping of course that the test comes back negative but at least if it's positive, then plan B can kick-in which involves some specific surgery but that's a future bridge I'll cross when it comes. The good news is that life expectancy is not affected. The waiting game means that having been exempt from one likely cause, another gopher has popped its head up. One by one, the neurologist will chip away at things until we know what it is and from there the treatment options can be discussed. I am fortunate though, as I must mention about a young lady who came out of the consulting room before I was called. She clearly had serious muscular dystrophy as she could not speak well at all and could only shuffle with a walking stick and she was pregnant as well. She reminded me of what's affected the former Springbok rugby player, Joost van der Westhuizen. They can do astonishing things in medicine now. While there is no cure for MD in all its forms, the symptomatic treatment has progressed well. Having "forgotten" our wedding anniversary last Friday, today's news for my wife was received with some pain. The positive side? I see no reason to alter anything I do and we'll deal with it as we go along. I will continue to laugh at things that make me laugh. The neurologist wants me to take my current medication and I asked him about possible side effects of which he mentioned increase flatulence was one. I've suffered from that all
Well secured archery equipment for sure! Hope things work out as best as they can, it sounds like some sort of holding treatment is possible to at least control the symptoms.
speramus in juniperus
-
Well secured archery equipment for sure! Hope things work out as best as they can, it sounds like some sort of holding treatment is possible to at least control the symptoms.
speramus in juniperus
Nagy Vilmos wrote:
Hope things work out as best as they can
Thank you, Nagy. Mrs. Wife is interested to know what the options are so she said she'll speak to one of the consultants that visit the hospice where she works. Right now, we have to wait to see if the gene is the explanation. On TV, they can solve murder investigations using DNA taken the day before. My little humble PAPBN1 is way down the pecking order and could take two months or more to get the result. They must get through a lot of teabags between now and then. :) I had the blood test taken at the hospital. I pulled the ticket from the machine. I was number 525 and the display said 524. That fitted together as there was nobody else in the room waiting. Then others came into the room. I was next, a minute at most? No. The vampires who take the blood could be heard talking about cooking and decorating. They called me in about five minutes later, "Sorry to have kept you waiting" she said. I was tempted to ask if she'd decided on a colour for the bedroom but thought the better of it. She, after all, is in control of the long needle they stick in your arm.
If there is one thing more dangerous than getting between a bear and her cubs it's getting between my wife and her chocolate.
