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@mrsbv

@merpreb and to all of you beautiful women...I am going through my own medical issues and the possibility of Lupus, Thyroid Cancer and/or mouth cancer. My my doctor has gone away on vacation again like she normally does just about every other week and leaves for three weeks. In the meantime, I am sitting here going crazy just waiting to find out what else I have. I also live with a rare disease called stiff person syndrome that has many variants. I must be emotional because I am in tears, because no matter what - you all are very strong women and clearly are the definition of WARRIORS! You are all an inspiration to me. I lead a support group for those of us living with Stiff Person Syndrome, on Facebook since 2012. I had to stop working and retire in November 2011. When I found out that I had Stiff Person Syndrome, I just was in denial. It affected my job, I was told that my position from Court Operations Supervisor and Courtroom Deputy to our Magistrate Judge would need to go on to someone else who could be at work every day. I was not GIVING UP! I made a terrible choice and stopped taking all of my necessary medication and just needed one last good year. I only made it through six months. Our lives completely change. When I researched my illness....I could barely find anything on the web. which not many specialists are very familiar with this rare disabling condition. Shortly after I joined this support group I was asked to be a part of the Admin Team. I have only let my feelings out to the public just a few times. Other than that I am doing everything to the best of my ability to help all of our SPS patients and families. I am very close to my mother-in-law and my husband's family. My mother-in-law gives takes very good care of me. My Daddy passed last year due to Cancer. My mother-in-law also had cancer, My Grandpa and Grandma passed away from Cancer, along with one of my Aunties and an Uncle. I have another uncle who just found out he has stage 4 thyroid cancer. He is not well at al. It has been pretty rough seeing one member of our family after another pass due to this ugly disease. Yet, I stay strong and support, educate and Advocate for our group members. We have almost 2200 members; some are family and friends.

I apologize for going in circles, but I have been very sick and bedridden since the second week of this year. I tend to have bad nights like that. Today is one of them. Please pardon me for writing about one thing; then the other.

I wanted to be sure to tell you all that each of you are such an inspiration to me. I am so happy to have this opportunity to be a part of this social connect group. I love and appreciate how positive, caring and empathetic everyone is to one another. I am very fortunate to be surrounded by such a caring and compassionate group. My heart and prayers go out to all of you. I am honored to be in this group. I need to get healthier, so I can spend more time on the group. I shall definitely need to set up a deadline for each challenge I have on my list.

Please know that although I have not ever spoke with any of you, I am very happy I logged on, read your "true stories", and love to see the determination and fight and compassion you have for each other. May our Heavenly Father bless you and your families.

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Replies to "@merpreb and to all of you beautiful women...I am going through my own medical issues and..."

Hello @mrsbv,

I am sorry to hear of all of the health issues you are facing right now. I noticed that Connect mentor, @johnbishop previously posted the following websites where you could find others dealing with stiff-person syndrome. Below there is also a website where you can find doctors who specialize in stiff-person syndrome. Will you please open those links and take a look?

I would also encourage you to seek a second opinion if you don't feel your needs are being responded to in a timely way. If you live near a multi-disciplinary health facility (like a university medical school or a Mayo facility) I would encourage you to go to this type of medical institution in order to seek another opinion and treatment.

> Groups > Brain & Nervous System > Stiff Person Syndrome
https://connect.mayoclinic.org/discussion/stiff-person-syndrome/

I'm not sure if you have tried this website but the American Association of Neuromuscular & Electrodiagnostic Medicine website has a link to search for a specialist: https://www.aanem.org/Patients/Find-a-Specialist. Have you been diagnosed with Stiff Person Syndrome?

Will you post again?

@mrsbv- Alma, good morning. Talk about warriors, look at you! It's not like you have a splinter! I'm very glad that you have joined us so Welcome to Mayo Connect. You have been dealing with so much yourself and reaching out to help others, good for you. You have set a fine example of how to pass along your experiences and suggestions that mean so much to others, as you stated. It is our way of passing on Hope!
I'm amazed that your oncologist takes so much time away from your needs. You might really really like her but my recommendation would be to look for someone who is more available for your needs. Can you do this or want to?