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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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09-06-2015, 09:11 AM | #1 | |||
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I somehow lost a big introductory post, and I could cry. I will just be brief, as I have some questions I would like to ask. Diagnosed with an autoimmune disease age 20. Also with hypothyroidism. Fast forward 30 years and a life of exhaustion, here I am. I believe they gave me the wrong diagnosis, scleroderma. All I had in common with my scleroderma friends was chewing, swallowing/choking problems, and feeling death cold. Whilst they found relief in hot weather, I felt worse. I have all the symptoms of MG, right down to the crooked smile, droopy eye, blurred and double vision, muscle weakness to point of falling over, dropping things etc. Needed esophagus surgically stretched regularly, suffered seizures, there are a lot more similarities. I have a new GP, who is young and refreshing. He said 3 magic words, "I believe you" and we went to work doing different blood tests. After reading so many blogs about thyroid problems, I believed all my problems lay there. I was negative for hashimotos and graves, ultrasound showed normal looking thyroid gland. He referred me to an endo, as I was displaying symptoms of thyrotoxicosis. Very shakey, like adrenaline surging thru me. Under range TSH, High T4, Low/med T3. Maybe a conversion problem, but I stopped the thyroxine. My Ana is 1/2560. Since a motorbike accident in April, I have never been the same. Bed ridden. No strength to do much, my dear husband has been amazing. Just getting dressed exhausts me. Breathing is difficult. Talking is too. Sometimes I can't form the sound to make a word. Other times, I have to not talk just so I can focus on breathing. My doctor has been on holidays, but I see him this Wednesday. I only read about MG last week. I read about breathing emergency, so saw the other doctor at my clinic. OMG, he was so rude. Told me to stop reading the internet. Told me nothing wrong with my breathing, yet I was visibly gasping, and really struggling to talk. He then thought I was just trying to create a law suit against the doctors who diagnosed me with scleroderma. WTF? I was so focused on my breathing, I didn't have the extra energy to call him a jerk. I came home, am kindly refusing visitors, cos I can't focus on talking with them, and they just don't understand. They think if they take me out it will be good for me, and I know they mean well, but I truly can't cope. I will ask my doctor to do the 3 antibody tests, can a GP request these? Also, if anyone here is from Australia, do they know if these tests can be done in Adelaide and how long until results? I hope I get a positive blood result. I need a diagnosis and treatment fast. I'm also worried about low oxygen in blood levels. Dizzy and vague, and weird feeling all over like tissues are starving. What would I look for? My circulation has always been bad. My skin on legs is mottly blue. Raynauds in hands and feet. Tiny red spots on face, not raised or itchy. Life long sinus issues. I think I have a silicon farm in right nostril, it's horrible. Nasal voice. I do B12 shots and vit D sups.
Wow this has gotten long. Thanks so much for reading. |
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09-06-2015, 10:56 PM | #2 | |||
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Junior Member
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answering my own post. Not really, but just an observation. Since resting and not talking much for five days, I looked in the mirror, and it looks like I have had a surgical face lift. My eyes are not droopy, I have more tone in my face. Breathing a little better. All these years and I finally figure it out. My dad is coming for a visit. I will make a note on how droopy I look after. I hate seeing photos of myself, but hubby is my witness. I wonder if chest appendages improve tone with rest
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09-07-2015, 10:28 AM | #3 | ||
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Quote:
You live in a place I always wanted to visit, but have not, at least yet. Good luck and find a good Nuro doctor if possible. FREDH |
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"Thanks for this!" says: | juliejayne (09-08-2015), KirraJade (09-10-2015) |
09-07-2015, 10:59 AM | #4 | |||
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Junior Member
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Quote:
I live right near the bottom of Australia, on the coast. We just are at the end of whale season. Southern Right whales and their babies. |
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"Thanks for this!" says: | FREDH (09-07-2015), juliejayne (09-08-2015) |
09-09-2015, 10:06 PM | #5 | |||
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Junior Member
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OK, I thought this forum was more active, but I will update in case my journey may help someone reading. If anyone can offer me any knowledge, please add your thoughts.
I had my appointment with my GP yesterday. He really is an easy doctor to talk to, I am grateful for that. So, I explained to him I was having breathing problems. I asked him if I might have MG. He said he was uncertain, he didn't feel I would have been 30 years undiagnosed. He listened to me as I explained many of my symptoms. Muscle weakness and all the obvious ones. Also how I have always felt like my head could drop off. How I could never sing nicely like I used to. How people always made comments on why I don't smile, or I frown too much. He said he would investigate. YAY. So, in Australia, GPs are only able to test the AChR antibody. You need a neurologist or other specialist to request the other tests. He listened to my lungs which were clear. He then checked my oxygen saturation using a thing he clipped to my finger. He did that several times, then he said "you are going to hospital". I was low. He hooked me up to an oxygen tank and called an ambulance. I stayed on oxygen in hospital for several hours, I felt better. They unhooked me, and monitored me, finally as I had displayed good blood oxygen levels, and no longer fighting to breathe, they sent me home around 10pm last night. The doctor also did the vital bloods, and they came back good. Last night is the first time in so long that I slept through the night. I don't appear to have any breathing problems today. Would just receiving oxygen for 4 or so hours reset things in my body? Of course I have not tried exerting myself. I need to go to the lab today and get blood drawn for the AChR test, it gets sent to Sydney, and I will get the results in one week. At least I may get an idea then if I will need more testing, a neurologist etc. |
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09-10-2015, 05:02 AM | #6 | |||
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Grand Magnate
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Hi KirraJade
Welcome to NeuroTalk . I have read what you have shared carefully and these are just my thoughts - your new GP sounds good to me. "He referred me to an endo" Good plan. "My Ana is 1/2560 [...] AChR antibody" That ANA titre sounds very high to me. Maybe get your GP to refer you to a clinical immunologist who will be able to do more detailed testing and then (depending, and after talking with your GP) refer you to a specialist rheumatologist and/or neurologist. All the best.
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Knowledge is power. |
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"Thanks for this!" says: | KirraJade (09-10-2015) |
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