Thank you for sharing, girls. You're amazing and inspiring. I have a question about the diagnosis. Did you have gad antibodies in the blood test? I wish I had them, it would make things much easier for me. Although I have all the symptoms, after the test the doctors still keep saying it's all in my head
Thank you for your kind words and we hope to keep helping! Both of us are Gad65 Negative. Lea is type 1 Diabetic and Ilea had a thyroid autoimmune disease. Please note that we are just sharing our situations - we really hope you find answers soon and send big hugs 🤗🤍
@stiffpersonsyndromeHeart2heart thank you for your kind answer. Can I ask a couple more questions, please? How did you both get diagnosed? How long did it take?
@@sergunchik74 answering as Lea here it took me about 6 years that were extremely difficult as I was gaslit by the majority of doctors - and its a very tough question to answer but ultimately in May 2021 I had to leave Western Africa and come back ro Lebanon as I declined very quickly in terms of mobility and upon clinical examination , positive EMG, fact i have type 1 diabetes since age 12, initial decent response to certain meds. Unfortunately there is no universal way and its so hard but i was first diagnosed with autonomic dysfunction (in the middle of getting an sps diagnosis).
Ilea was diagnosed 10 years ago at age 30 while on faculty at Yale Medical School, where she was diagnosed but went to several more experts before accepting the diagnosis. She first saw a chiropractor at age 10 and struggled with muscle spasticity her whole life. She thinks she was spared many years being gaslit because she is a Psychiatrist.
@stiffpersonsyndromeHeart2heart 6 years is absolutely crazy, I'm sorry you had to go through that. Lots of doctors are just ignorant, when they don't understand or know anything, instead of digging into the problem, they just say it's in your head and refer you to a psychiatrist. Yesterday I visited a renown neuro-muscular neurologist who is very familiar with sps, participates in medical conferences and I thought he must be open-minded. He examined me, looked at the past medical records, my negative gad test, did emg on 5-6 muscles and....just subscribed me antidepressants. I'm so angry, disappointed, tired of being gaslit. Have another appointment next week, desperately need to get the answers
Thank you ladies 😘😘
@@laurajeanholt1755 thank you for watching and hopefully help us reach more and more people! 🫶✨
Thanks both. I get more stressy when going out and take extra medication. (Diazepam).
@@lizblows7101 thank you for watching! We both think everyone ends up finding their own way to managing « the going out » when it happens 🫶🤗
Great topic & all so true! ❤
@@WendyGulla thank you! We thought it was as well and happy you liked the episode. Our next episode is on a topic specifically requested 😉
Thank you for sharing, girls. You're amazing and inspiring. I have a question about the diagnosis. Did you have gad antibodies in the blood test? I wish I had them, it would make things much easier for me. Although I have all the symptoms, after the test the doctors still keep saying it's all in my head
Thank you for your kind words and we hope to keep helping!
Both of us are Gad65 Negative.
Lea is type 1 Diabetic and Ilea had a thyroid autoimmune disease. Please note that we are just sharing our situations - we really hope you find answers soon and send big hugs 🤗🤍
@stiffpersonsyndromeHeart2heart thank you for your kind answer. Can I ask a couple more questions, please? How did you both get diagnosed? How long did it take?
@@sergunchik74 answering as Lea here it took me about 6 years that were extremely difficult as I was gaslit by the majority of doctors - and its a very tough question to answer but ultimately in May 2021 I had to leave Western Africa and come back ro Lebanon as I declined very quickly in terms of mobility and upon clinical examination , positive EMG, fact i have type 1 diabetes since age 12, initial decent response to certain meds. Unfortunately there is no universal way and its so hard but i was first diagnosed with autonomic dysfunction (in the middle of getting an sps diagnosis).
Ilea was diagnosed 10 years ago at age 30 while on faculty at Yale Medical School, where she was diagnosed but went to several more experts before accepting the diagnosis. She first saw a chiropractor at age 10 and struggled with muscle spasticity her whole life. She thinks she was spared many years being gaslit because she is a Psychiatrist.
@stiffpersonsyndromeHeart2heart 6 years is absolutely crazy, I'm sorry you had to go through that. Lots of doctors are just ignorant, when they don't understand or know anything, instead of digging into the problem, they just say it's in your head and refer you to a psychiatrist.
Yesterday I visited a renown neuro-muscular neurologist who is very familiar with sps, participates in medical conferences and I thought he must be open-minded. He examined me, looked at the past medical records, my negative gad test, did emg on 5-6 muscles and....just subscribed me antidepressants. I'm so angry, disappointed, tired of being gaslit.
Have another appointment next week, desperately need to get the answers