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I live in the Netherlands. The health system here might be different. At the moment I am waiting for the results of my MG antibodies bloodtest. That was ordered by the Internist, and hopefully, he will then be able/prepared to refer me to another Neuro and or N-O.
I will keep you posted. |
Just back from the Internist. My blood work was negative for everything... apparently. I foolishly asked if they had tested for MuSK antibodies. Ice age descended. "What is that?" was his response. I tried to explain, but he had shut down and wasn't listening.
There is nothing wrong it is psychiatric... burn out. Was his final word. I did manage to get a referral to another Neuro, but apparently we have no Neuro-ophthalmologists in the Netherlands. Or so this Internist said. If anyone knows of one, I'd be interested to hear where they are. |
You need to do research when any doctor either shrugs their shoulders or says, "No." Or Nein. Or whatever other language. ;)
http://www.linkedin.com/pub/judith-v...gen/25/113/41b http://www.umcutrecht.nl/subsite/res...vestigator.htm http://www.eunosweb.org/ You must be able to find someone there to assist you! And if you are short of breath, find a pulmonologist and ask for the necessary breathing tests. Work the system!!! Annie |
OK, you are of course right. But they don't publish their contact details, as they don't want patients contacting them directly, and if I do find the details my current GP et al are going to be ****** at me for bypassing the "official channels". Has anyone tried this route and have you had success or did it cause more problems?
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Do you want to be politically correct? Or do you want care that you DESERVE?
Yeah, I get that neuros can be, well, arrogant pricks. Really. It's not going over their heads. Would your GP be willing to refer you to a neuro-ophthalmologist if you told her about one? Well, if not, then go anyway. It's your body, not theirs. You have the right to have care. Geez, what century are we living in?! Even the doctors in BC understood the need for prompt and thorough healthcare! Whatever you do is up to you. But then you'll have to live with the consequences of not breathing or moving if you have MG! Annie |
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Just curious if you found a solution. |
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A year and a half later I started having Monocular diplopia. It became progressively worse. My Neuro said 'if its monocular its not caused by MG'. I went back to the Opthamologist. He said that sometimes the lens put in after cataract surgery becomes clouded over. He used a laser treatment to cleanse the lens and my eyesight returned to the after cataract surgery levels. Before the treatment I was convinced that it was caused by MG. My vision was worse when other MG symptoms were bad. It also got worse as the day wore on. Now I am wondering if it is just the opposite. Maybe additional muscle activity needed to focus with the clouded lens caused muscle fatigue because of the MG. |
Vein777
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However I finally got to see a Neuro-ophthalmologist. She did the usual sort of eye tests, and realised that I was blinking more than is normal. That is called Blepharospasm. It is a neurological condition, cause unknown, no cure available. The blinking damages the tear film, and that causes double vision, that varies according to the amount of blinking. Naturally if you are tired and have spent a lot of time at the computer, that can worsen the effect. Reducing the blinking reduces the double vision, and the normal treatment (of symptoms) is Botox. Totally not a good idea if you have or suspect MG. However, after starting on Mestinon, the blinking has reduced dramatically from 80 per minute to 20 per minute and the double vision has improved, though not gone completely. I think that it is worth pointing out here that if I had listened to the specialists I could have gone down the same route as Edwin. It had already been suggested that I should have cataract surgery, and if I had agreed then I would have had needless surgery, which then fails to correct the real problem. Quote:
It is incorrect. If its monocular and you have other MG related symptoms, then it can be MG. MG can cause Blepharospasm... blepharospasm can cause monocular DV. Personally I still think that the actual answer is that MG can affect the ciliary muscles that move the lens of the eye. |
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I do get halos a bit at night around lights - have you had that problem. I looked at a possible connection between chromium and zinc level ratios with respect to cataracts. I say that because this relationship supposedly can cause or eliminate glycation depending on that relationship. I know I am chromium deficient. |
Cataracts can cause much of this. What cataracts cannot do is vary from day to day and during the day.
I am not ruling out, in fact I think it highly likely, that cataracts are part of the problem. However, any clouding of the eye in my case is minor and would not warrant cataract surgery. Don't forget that once you have had cataract surgery, you eyesight is restricted to one focal length, and there are many many reports of people who have problems after cataract surgery, especially with double vision. |
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