How can we support you?
What information do you hope to find on our site? Is there anything in the rare community as a whole you would like to see more of?
I have Myastenia Gravis, but continue to read about other rare conditions. For my condition, fatigue has been a battle, but thankfully my neurologist has been working with me and his decision to put me on 10 mg of Prednisone has helped. I also find it is hard for others to comprehend what living with a chronic illness is like. I was a caretaker for my best friend for many years who had a chronic lung condition so I got to see first hand the challenges. When I was diagnosed, I had more information than most on what it is like to deal with an on-going health problem that will always be there unless God chooses to miraculously heal me. Thanks to all who are trying to help.
Hi
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Thanks so much for much for sharing about your journey with Myasthenia Gravis.
Yes, it is hard for others not affected by chronic diseases to fully grasp the day-to-day realities.
Thanks for thanking those of us trying to help to lighten the load, and thank you for helping your dear friend.
Hugs,
Gina Miller,
RareDisease.net Team Memberi would like to know how to talk about my myasthenia. A diagnosis that I made. I am a retired physician. And no one would believe my symptoms. I finally ordered my own Mestinon, which provided incredible relief for my pain and disability. My primary care finally is allowed is allowing to write for that medication. However, he has ordered a urgent neurologic consult as well as a genetic consult for me, and that was four weeks ago no reply from anyone this is upsetting to me and I don’t know if anyone else has run into this kind of problem. I have a great friend in Illinois and we have a good relationship. She is willing to do anything for me but I hesitate to be a burden to her. She does provide me with great companionship and friendship. Anyway, that’s sort of my story for now. I don’t I don’t know how to get through to my primary care the urgency of my symptoms, which are absolutely horrible . So I wrote myself a second prescription for methotrexate. It’s just sad that I have to do this and I’m only thankful that I have kept my medical license to be able to even do this. Anyway, that’s that’s me. A deep muscle biopsy showed pervasive type two muscle fiber loss, which helped me understand some of my weakness. However, I have not been able to see anyone to know what to do about this. My primary care just is busy and I think has lost interest. Thank you for reading this Larry.
Gina,
I am sorry my wife prefers the term Care-Partner and you remind me how lucky that makes us. We appreciate your positivity. Every single person on this site deserves respect. There are times that my frustration comes out. Today Fraya and I will go to Cottonwood Arizona and get our monthly Pedicure. That is one way that I deal with foot issue. Nightly my feet are raised for 30 minutes, next I put my feet in a leg massage for at least 20 minutes. This has helped the edema that has been a source of walking difficulties.Hi
,
I love that term! "Care-Partner." Perfect!
I hope the trip to Cottonwood proved to be a relaxing one for you both?Thanks for connecting with me, and for sharing about some of the things you do to reduce edema in your feet.
Wishing you and your dear Fraya a sweet week ahead,Gina Miller
RareDisease.net Team Member
I am a Alpha-1 anti-tripsan deficiency non-alcoholic steatosis fibrosis chirosis stage 4liver disease. I started a new insurance company and they stopped my prolastin infusion in was getting from Eversanna without a single problem for years. They discontinued the prolastin and said they would take care of it. 3 months later there is no medication yet.
I have arthritis 2 weeks ago I ordered remicaid. Now they discontinued this to. What is wrong with HUMANA ¿ I feel terrible
TowandaHi
,
I wish we were able to help you with your new insurance under Humana. We aren't insurance experts, unfortunately.Have you discussed these issues with your primary care physician? Or with a representative from Humana?
Keep calling until you reach someone who can help you get this all sorted out.Gina Miller
RareDisease.net
Team Member
Corene,
What I would like to see are comments from People who are actually diagnosed with a rare condition (I have Progressive Supernuclear Palsy) rather than Caretakers describing the eventual demise of a subject who they observe. There can be hope! Let us encourage each other rather than accept the plight we face. Blessings, MikeHi
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I am moderating today, and so will reply for Corene.
Thanks for asking for more content from those of us who suffer from rare diseases. Progressive Supernuclear Palsy is a very serious condition. I applaud you for focusing on hope and for wanting to encourage this in others, too. I agree that there is hope to be found when navigating life with a rare disease, and patients are the best source of hope.I write for this site as someone living with two rare diseases, but have not yet needed caregiver assistance and may never for my rare diseases (MAC Lung Disease and Cystic Fibrosis). Still, there have been some very unpleasant challenges along my path, and it's felt good to lend some hope to others in my articles... I realized that I can focus even more on the positives, though, after reading your heartfelt share. Thank you, and blessings to you, too.
Gina Miller,
RareDisease.net
Team Member
