[KirraJade]

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.

[KirraJade]

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

[FREDH]

Originally Posted by KirraJade

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

You certainly have lots of symptoms of MG, but no one except your doctor can tell for sure. MG is far too hard to pin down by listing the amount of symptoms you are having (good luck by the way). You have wrote about many symptoms I am familiar with, but some could be anything.
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

[KirraJade]

Originally Posted by FREDH

You certainly have lots of symptoms of MG, but no one except your doctor can tell for sure. MG is far too hard to pin down by listing the amount of symptoms you are having (good luck by the way). You have wrote about many symptoms I am familiar with, but some could be anything.
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

Thank you Fred, I have been reading thru many posts in here, and my right eye is closed. I see how hard and stressful some folks have had trying to be diagnosed. I am afraid if I produce negative blood results, I will not have the fight I used to have to make them listen. I'm tired. I have lost a lot of respect for the medical profession, and believe me, I have been disrespected badly by several. I have a promising GP, but a positive test result would make my life so much easier. Thirty years, and no treatment, I didn't take anything for the scleroderma. All the doctors I saw were always telling me I was so lucky not to have organ involvement, that I sucked it up (mg symptoms), really out of guilt.
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.

[KirraJade]

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.

[kiwi33]

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.

[KirraJade]

Thank you for your reply kiwi, and another Aussie. I had a really good day today, got my blood test, came home and cooked lol. Baked 2 cakes too. I feel so much better. To me that doesn't make sense, to improve so dramatically just after receiving the oxygen yesterday and last night. I'm not struggling to breathe, and have more energy. Does this happen with MG?
My ANA has been that high for 30 years. Diagnosed with systematic or also called diffuse scleroderma, the worst type. The fact I have not developed organ involvement is not the course this disease runs. The doctor at the hospital thinks I may have a less severe form of scleroderma, along with MG. I think they can test now to see which type of scleroderma one has. I never had specific tests.
I will definitely get that checked. My doctor is great isn't he, I'm so lucky. He ran the autoimmune thyroid tests, coeliac disease and lupus. They were negative.
I see the endo at the end of September.
Thanks again for your reply kiwi

[kiwi33]

Cooking/baking is always good .

It is good to read that SLE has been ruled out in the context of your elevated ANA (in my day job I am, among other things, a non-clinical immunologist).

Elevated ANA happens in about 90% of people with scleroderma. This Aussie link might help you in this context; http://www.nevdgp.org.au/info/std_mi...CLERODERMA.htm .

I reckon that your GP is doing a great job.

[KirraJade]

That link was great thank you kiwi. I will see if I can get those antibody tests. I have all the Crest symptoms. Scleroderma doesn't have muscle fatigue I don't think, also heat is supposed to make me feel better I was told, yet I can't function in heat. I'm kind of thinking that I have crest scleroderma and MG. I am going to find out exactly which autoimmune diseases I have. I am not nor have been on any medication, except zantac and Oroxine. I think maybe it's time I asked what treatments are available. All my rheumatologists, doctors told me I was doing so well and shouldn't take steroids and methotrexate. I was really not doing as well as I appeared. I lost a friend to scleroderma, she was 38. I knew I didn't have the diffuse complications. I never gave a thought I may have 2 diseases. Well, at least now I'm on the right path. Maybe I don't have MG, but I will know more about what I do have, and ask for treatment. Do you have MG? That's awesome you are an immunologist. What is non clinical? I have never been seen by anyone except a few rheumies. My husband has lupus. He is ok though.
I make these cakes, and I put in 8 cups of grated veggies lol, only half cup sugar, no dairy, and all the family have no clue. I put a tin of pineapple, and call it tropical pineapple cake
lol.

[kiwi33]

I am glad that link was useful.

I don't have MG and as a non-clinical immunologist I have a PhD rather than medical qualifications. Most of my work in immunology has been concerned with the structure and function of antibodies.

If you do manage to get those antibody tests done I would happy to try to help out by commenting on the results.

I like the idea of "tropical pineapple cake" .