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Oct 6th, 2025
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hello friends, I suppose I just need a little support or maybe I just need to tell someone.  I haven't even shared this with my family except my husband. I have been having a lot of weird symptomns including visual problems. I spent one day last week seeing different drs. and now they are scheduling more tests and I will be seeing the Neuro again. They think I have Myasthenia Gravis which is another autoimmune disease. They are ruling out vasculitis and other Lupus neuro problems. Actually, I am not stressed about this. I am more stressed about the long days of dr. appts. and tests because of the pain involved in getting through them. I have so many diagnoses that another one is just that. We do need to know what is going on though. Thanks for letting me put my rambling thoughts in to some rambling words. I will be letting you know the outcome but it may be another week. I so appreciate my KickAS family. Blessings.
![[Linked Image]](https://www.kickas.org/images/flowers/Smilingsun.gif) Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Dec 2010
Posts: 456
Warrior_AS_Kicker
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Warrior_AS_Kicker
Joined: Dec 2010
Posts: 456 |
Hi Joyce- been thinking about you and I am sorry you are fighting another battle. You have an awesome team of docs so I am sure they will figure out the best way to treat your new issue real soon. In the meantime, we are all here for you.
Love, Shari
Meds -Hizentra, leflunomide, Prednisone
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Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360 |
I hope things get better.
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Joined: Nov 2001
Posts: 18,187 Likes: 7
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,187 Likes: 7 |
Joyce, I'm so sorry to hear of this latest battery of tests and doctors you must undergo. It just seems so damned unfair.
I'm thinking of you and hoping that the eye problems are just, well, age, you know? Not another auto-immune disease.
Love and Warm Hugs,
Kat
A life lived in fear is a life half lived.
"Strictly Ballroom"
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Joined: Dec 2008
Posts: 5,231
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Joined: Dec 2008
Posts: 5,231 |
Oh... Dear Joyce, I'm so sorry you have to endure this. I quite understand how gruelling days of medical appointments and tests can be.
I try to cope by breaking the day into small chunks and trying not to think beyond the chunk I'm in. Plus I devise little rewards for myself at the end of each chunk. Like a 15 minute break with a book. Or a nice cup of tea.
I hope it all goes ok. I'll be thinking of you. I'm off to the rheumatologist tomorrow - another long day, partly because of all the driving.
Wendy
Rheumatoid Arthritis
Methotrexate, Celebrex, Plaquenil
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hi Shari, I have been thinking of you also. I am sorry I haven't been in touch. Things have been, well, life.  I hope you and the family are staying well. Hugs.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hi Tnate.
I appreciate your well wishes. I have been thinking of you also. Hope you are getting some relief.
Blessings.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Thanks Kat. I wish it were just the age thing too. It is not just the visual problems but that is a big part. All of a sudden my right eye get very blurry and at times the muscles just quit working. Also, this may well be what is wrong with my voice. When I am tired, the muscles are just unresponsive and I have a real effort breathing. It is common with Lupus I understand. My rheumatologist has thought this for about a year and has at times given me steroids and put me on the Plaquenil again. This time the Optho and Neuro-Optho came up with the same diagnosis not knowing the Rheumie had. Right now I am up not sleeping with very severe pain. We have an extreme weather front coming in which most every one North/Northwest of us probably already know about. It is getting that time of the year. How are you? Hope you are doing ok. Hugs.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Nov 2002
Posts: 6,928 Likes: 3
Addicted_to_AS_Kickin
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OP
Addicted_to_AS_Kickin
Joined: Nov 2002
Posts: 6,928 Likes: 3 |
Hi Wendy,
Thank you. I have been thinking of you too. You are my inspiration for keeping on keeping on. I admire you for keeping on working and continuing your education.
I hope the hips will be just a small bump in the road. My family members that have had joint replacements say that the hip surgery is a much easier surgery than the knee. I hope that is true for you.
I will be thinking of you as you travel today. Let us know what you find out.
Hugs.
Possi ********************************************************* RUN WHEN YOU CAN, WALK IF YOU HAVE TO, CRAWL IF YOU MUST, JUST NEVER EVER GIVE UP! "A FRIEND HEARS THE SONG IN YOUR HEART AND SINGS IT TO YOU WHEN YOU CAN'T REMEMBER THE WORDS." "A FRIEND LOOKS THROUGH YOUR BROKEN FENCE TO ADMIRE YOUR FLOWERS."
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Joined: Mar 2002
Posts: 9,552 Likes: 10
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Joined: Mar 2002
Posts: 9,552 Likes: 10 |
Hello Possi,
Hang in there, pray that things improve and all the visits are not very stressful.
Best to you,
Tim
AS may win some battles, but I will win the war.
KONK - Keep ON Kicking
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