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Posts (12)

Jul 31, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

@johnbishop … Many, many, many THANK YOU's!! 😊 You are truly kind and thoughtful. Bless your caring, compassion and empathetic heart! ❤ You have helped me many times. You are clearly an inspiration to me…and I am sure many others! 🏆 Thank you!!

Jul 29, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

My final suggestion would be to plan to meet "the specialist" prepared with all the information you have accumulated through your medical journey; similar to a resume…yet, a medical journey. You will be prepared to answer all questions.Please make sure to get the patient questionnaire prior to you appointment and have it completely filled out. You should also prepared to answer and add new notes to your medical journal. I tend to keep a video and/or photo journal of my symptoms, as well as a written journey. This is important as the last Specialist you may have been with prescribed you with medications that you have already tried and did not work for you. Of course, as I mentioned before…you want to be very cautious of who you are meeting. Did you review the Specialist credentials, what rating reviews does this Specialist have? No matter what, Patients must connect with his or her specialist. Please be cautious. It's great to know you are able to trust your specialist and that you can open your heart to that specialist. I would suggest that you not judge on the opinion of others. YOU are making an important decision…and it is your decision; and not the decision of others. Remember, YOU always come first. ❤

Jul 24, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Hello everyone. Goodness, I have missed out on the best ideas! Well, when I met my Specialist who my aunt had previously met and did not care for. I looked up his bio and could not make a decision based upon my auntie's perspective. I always make sure I do not make judgment on any specialist until I see what type of connection we have. I do like to know who I am meeting with, in advance. After meeting with 14+ local specialists, this one was about a 2.5 hour drive. I had already filled out my paperwork, so it was just a matter of catching what he did differently than the other numerous specialists I met. I was very nervous and wanted to make sure I had everything in order. So, I already read his history, credentials and was also excited to meet him based upon the fact that I was hoping for that miracle to find out "what rare disease I had"; considering all of the local specialist I met with locally could not give me any ideas. I was originally diagnosed with Fibromyalgia, then MS. I made sure to take a profile image with a variety of flares throughout my body. My hands and feet were the worst. It was a bit stressful considering I had already met with 14+ specialists where I lived. So I had an idea what "he might" be like, but I could not make a judgment call based on my aunts opinion. He already had medical records and had an idea what I was going through. My hubs and I were desperate for answers. He walked in the room and was very kind; my immediate impression was that he was a bit shy and very quiet. He asked many questions, let me share my pictures with him and I was filled with a bit of anxiety. I shared my images with him (which were kind of a mini journal), but my body gave away all of the examples I had printed for his viewing. He was very thorough, kind and attentive. He let me speak and share my story. He performed a few motion and flex tests. He watched how I walked and he was truly listening to me. Our meeting was about 2 hours. I was surprised as usually it was an "okay, next…lets take a look". The answer was always, "I have no idea what your problems and/or issues are. Everything looks fine." After 14 plus specialists, I just would now allow that to happen again. I know I did not have control of the situation. It was all up to my Neurologist to (hopefully), give me an idea or and preferably an answer to all of these strange things and severe pain that I was going through. The pictures I shared with him, were right in front of him. He said, "Well, we will need to do a few tests. However, I need you to come back for the tests." All I thought of was that I would be left hanging and waiting for an answer. At the end of our appointment, he was straight forward and said, "Well, depending on our tests you may have a, b, c or this very rare disease, but we need to wait for our other tests". My heart just dropped as tears starting flowing. The last possibility was a very rare 1 in a million neurological autoimmune disabling disorder called Stiff Person Syndrome. He was very kind and honest with me. This is my story, starting from day one. He was very sympathetic and told me things would be okay. I had worked in the legal field since I was 19. I had no idea what I was facing. All I could think of was, I cannot wait until I get to research this so called, "Stiff Person Syndrome". My final words to share with everyone is that, we must always give the Specialists we meet an opportunity to allow us time to get to know them. We must never make a judge others, just because another person you know did not have the nicest things to say. since 2009, I have established a very close relationship with my Neurologist. My husband was with me, of course. I was very honored to meet with him and get to know him through this fight and battle I have ensured. I truly trust my Neurologist and I am very happy when he is very helpful when he relays the pros and cons of my rare disease. We must always give people a chance and let each individual we meet show us what type of person he or she is. My neurologist is holding my heart and I completely trust him. There are so many judgmental people in this world. We must always let people we meet show us who they are…in just the same as we must do with others. It is very important to me to get to know someone. I cannot and do not never judge others based on others opinions. It takes two…just like a personal relationship. I felt sad when I had to leave. However, I could feel how much empathy my Neurologist had for me. I am very happy that I did not allow the words or thought of others to lead me in a different direction. My Neurologist is such a gentleman with clear compassion. I would never have known him if I had judged him before even getting to know him. 😉

Jul 24, 2019 · Living with Neuropathy - Welcome to the group in Neuropathy

Hello everyone. 😉 Hi everyone, my name is Alma. I am pleased to meet you. For several years now, I believe I have neuropathy, yet every time I mention it to my neurologist, I also have stiff person syndrome. My feet get very hot and/or get to a freezing temperature. Right now for example, my feet are curling down (I am in severe pain). There are days that my feet are so numb. Wearing socks is a definite no-no for me. I can have loose socks on and within a few minutes the socks will make indentations. This has been going on since I was diagnosed with Stiff Person Syndrome in 2009. As I indicated, my neuro really hasn't done or said anything about this issue. I need help. Today, is a very bad day. Thank you for reading this.

Jul 24, 2019 · Facing Cancer Recurrence, PTSD & Acknowledging Mental Health in Cancer: Managing Symptoms

@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.

Jul 24, 2019 · Blood sugar levels high after surgery. Need encouragement in Diabetes/Endocrine System

@brendakaye @retiredteacher @dorisena – Hello, my name is Alma. I joined not too long ago, but have been bedridden for almost every day of this year (except for maybe 5 days for doctor appointments, etc. I live with a rare 1 in 1 Million autoimmune neurological disorder called Stiff Person Syndrome. As I sit here reading what each of you are going through my heart just breaks. Yet, I can see how strong each of you are and that you all are clearly WARRIORS! Inspiration is just the best! Bless your hearts! My prayers are with you all. God bless…

Jul 24, 2019 · Giant Cell Arteritis Concerns after One-sided Jaw Pain in Autoimmune Diseases

@dsteede and @kdmorris – I know my reply to each of you is a bit late, but I just wanted to say that I hope you both are able to have a little peace. More importantly, please know that I shall keep you both in my heart and prayers. God bless you both.

Jul 24, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

@contentandwell – Hello there. I just wanted to say that I am very sorry or what you are going through. Pain is such a horrible thing. One of these days, we shall have a miracle pill to take all of our ! I know it will not happen, but it's always nice to think of the something that makes you smile. I am sending you positive thoughts and blessings. I hope you are recover peacefully. 😉