Heard one doctor talking about how MCAS could trigger hypermobility instead of the other way around… It’s very interesting to hear different studies and perspectives.
Absolutely! We don't yet fully understand the connection but it is definitely possible that mast cell degranulation degrades connective tissue leading to weak tissues, joint laxity, stretchy skin, etc. Check out my other podcast episodes as I have discussed that a lot!
@ Thank you! I definitely plan to! I had an incident when I was 6/7 years old where I got stung and had a severe reaction. In the following weeks and months, I was all of a sudden allergic to almost everything in my environment. I also developed asthma and vitiligo. It does seem to have triggered things and have never quite been healthy, although I led a pretty normal life until my mid to late 30s. Post covid is when I seemed to have developed POTS. I was diagnosed with HSD at age 43 (just a month or so ago), although I meet the diagnostic criteria for hEDS. The doctor I saw seems very conservative with giving the Ehlers Danlos label, but it really does seem to be basically the same diagnosis. I’m looking forward to finding some relief. I likely have MCAS and POTS and have chronic, widespread joint pain and inflammation. I’m also developing muscle spasms all over and have mild neuropathy in my feet and legs. I am thankful my orthopedic noticed my lax/unstable joints earlier this year. After years of going from doctor to doctor, I’m finally getting answers! I know this is a long reply, but I thought it might be helpful for anyone else who may read it. 😊
This is extremely helpful and I am grateful for your comment!!! It is fascinating how quickly our health can change and this can definitely help others reading this!!!
Yes, thank you again for helping so many of us. I’ve mentioned before that mid 2023. I was diagnosed with HSD (probably HEDS). Approximately 2 1/2 years ago my now 40-year-old family member had a large brain aneurysm, then they discovered multiple in her spleen. Once she recovered from the brain aneurysm, they had to do a very extensive removal of her spleen, piping the aneurysms because there were so many it must’ve been engorged with blood, too much for her to lose during the surgery. Now they were watching something in a lung blood vessel, and they found another aneurysm in her brain forming on the surface ther side. She has been on Medicaid because of these issues and psychological issues. She went to a geneticist within the last two years, but they never gave her any diagnosis of vEDS. or HSD/heds. Her fingers bend backwards and her hands look like they are those of an 80 year-old. I can’t believe she’s not gotten a diagnosis and I don’t know what more to do to help. They are watching her blood vessel issues closely, but it’s been a very scary route for our family. Her two daughters have extreme flexibility in their fingers. I’ve never looked at their other joints, but I’m concerned that this could be going undiagnosed for them. Looking back I think my mom had this as well. She passed away four years ago from a hemorrhagic stroke. (Also had tachycardia, major GI Issues, random body pains, etc.. This family member has also had open heart surgery at age 8 for large atrial/septal defect. They are watching her aortic valve closely for years now. Any suggestions/thoughts?
Your interviews are always so packed with amazing content! It inspires hope that inch-by-inch all these pieces of the puzzle may help restore a quality of life. It is also hopeful that PCPs can find easy to understand explanations on your site, which has become something of a virtual library. Thank you so very much for the work you are doing!!!
Aww, thank you so much. That is one of the goals - that physicians will watch and learn how to recognize these patients that are most certainly already in their practice! Do you have a favorite episode?
Have you or someone you know faced challenges in getting an accurate diagnosis related to symptomatic joint hypermobility?
Am I dyslexic again or can I actually not find the show note with that list of red flags? 👀
@@KxNOxUTA We are trying to sort out how to add it. In the meantime, I can email it to you if you want. HypermobilityMD@gmail.com.
Excellent! Two of the best EDS resources!❤❤
Thank you so much! Have you been able to listen / watch any other episodes?
Another great one. Thanks Linda. Did she send you the red flags table from her book you two talked about in the 15 to 20 minutes section?
Yes. I can email it to you if you want. HypermobilityMD@gmail.com.
Heard one doctor talking about how MCAS could trigger hypermobility instead of the other way around… It’s very interesting to hear different studies and perspectives.
Absolutely! We don't yet fully understand the connection but it is definitely possible that mast cell degranulation degrades connective tissue leading to weak tissues, joint laxity, stretchy skin, etc. Check out my other podcast episodes as I have discussed that a lot!
@ Thank you! I definitely plan to! I had an incident when I was 6/7 years old where I got stung and had a severe reaction. In the following weeks and months, I was all of a sudden allergic to almost everything in my environment. I also developed asthma and vitiligo. It does seem to have triggered things and have never quite been healthy, although I led a pretty normal life until my mid to late 30s. Post covid is when I seemed to have developed POTS.
I was diagnosed with HSD at age 43 (just a month or so ago), although I meet the diagnostic criteria for hEDS. The doctor I saw seems very conservative with giving the Ehlers Danlos label, but it really does seem to be basically the same diagnosis. I’m looking forward to finding some relief. I likely have MCAS and POTS and have chronic, widespread joint pain and inflammation. I’m also developing muscle spasms all over and have mild neuropathy in my feet and legs. I am thankful my orthopedic noticed my lax/unstable joints earlier this year. After years of going from doctor to doctor, I’m finally getting answers!
I know this is a long reply, but I thought it might be helpful for anyone else who may read it. 😊
This is extremely helpful and I am grateful for your comment!!! It is fascinating how quickly our health can change and this can definitely help others reading this!!!
Yes, thank you again for helping so many of us. I’ve mentioned before that mid 2023. I was diagnosed with HSD (probably HEDS).
Approximately 2 1/2 years ago my now 40-year-old family member had a large brain aneurysm, then they discovered multiple in her spleen. Once she recovered from the brain aneurysm, they had to do a very extensive removal of her spleen, piping the aneurysms because there were so many it must’ve been engorged with blood, too much for her to lose during the surgery. Now they were watching something in a lung blood vessel, and they found another aneurysm in her brain forming on the surface ther side. She has been on Medicaid because of these issues and psychological issues. She went to a geneticist within the last two years, but they never gave her any diagnosis of vEDS. or HSD/heds. Her fingers bend backwards and her hands look like they are those of an 80 year-old. I can’t believe she’s not gotten a diagnosis and I don’t know what more to do to help. They are watching her blood vessel issues closely, but it’s been a very scary route for our family. Her two daughters have extreme flexibility in their fingers. I’ve never looked at their other joints, but I’m concerned that this could be going undiagnosed for them. Looking back I think my mom had this as well. She passed away four years ago from a hemorrhagic stroke. (Also had tachycardia, major GI Issues, random body pains, etc..
This family member has also had open heart surgery at age 8 for large atrial/septal defect. They are watching her aortic valve closely for years now.
Any suggestions/thoughts?
I am so sorry your family has gone through so much. Getting a second opinion is often the best option.
Your interviews are always so packed with amazing content! It inspires hope that inch-by-inch all these pieces of the puzzle may help restore a quality of life. It is also hopeful that PCPs can find easy to understand explanations on your site, which has become something of a virtual library. Thank you so very much for the work you are doing!!!
Aww, thank you so much. That is one of the goals - that physicians will watch and learn how to recognize these patients that are most certainly already in their practice! Do you have a favorite episode?