What is the Difference Between hEDS & HSD by Dr. David Saperstein
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- Опубликовано: 23 авг 2024
- Dr. David Saperstein👨⚕️recently held a Live Virtual Q&A Session on EDS (Ehlers-Danlos Syndromes), HSD (Hypermobility Spectrum Disorder), CM (Chiari Malformation), and CCI (Cranial Cervical Instability.
There were a number of people that were unable to attend due to being at capacity. So, we thought we’d share some of the questions asked.
Question asked:
𝐖𝐡𝐚𝐭 𝐢𝐬 𝐭𝐡𝐞 𝐝𝐢𝐟𝐟𝐞𝐫𝐞𝐧𝐜𝐞 𝐛𝐞𝐭𝐰𝐞𝐞𝐧 𝐡𝐄𝐃𝐒 & 𝐇𝐒𝐃?
Dr. Saperstein breaks down the differences, explains new diagnostic criteria and points on the Beighton scale, and how genetics and family history play a role.
Learn more about hEDS, HSD, & EDS now.
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I was diagnosed with HSD today despite having a 7/9 (only thing not hypermobile were my elbows). Have always been told I have silky soft skin, skin is very stretchy, dental crowding, and heel nodules. did not even get asked about my mom who never was diagnosed due to her family not getting her medical care growing up but she has most of the same symptoms… was told the label doesn’t matter by the geneticist but still wish I knew for sure what was going on. I have tons of joint issues: TMJ, scoliosis, swan neck/duck bill deformities and Raynaud’s, myofascial pain syndrome, and POTS. I just wish I knew for sure…
We offer second opinions should you be seeking one.
My sister was diagnosed with hEDS by a geneticist but I can't currently meet the Beighton score being mid 50's and male with joint and degenerative discs in cervical spine. Use to be able to touch ground with palm without bending knees. I've had to deal with MCAS, autonomic dysfunction and hypermobile shoulders, popping and snapping in joints, neck, shoulders, wrists and ankles.
I was referred to a genetic lab due to mild aortic root enlargement and a few other things but they only tested for vEDS.
You must be referring to the Norris Lab at MUSC that found a gene variant that is in about 20 percent of participants in their hEDS study. I believe this is the most comprehensive study to date of hEDS patients.
The way I look at it is that they’re gatekeeping the diagnosis to a select group of patients that they can use to identify the genomic factors. I’ve got so many problems with it… and the only reason I’m alive is because my ligaments broke before my bones did (direct injuries to si joint, thoracic spine/collarbone, and C1).
What do you think about the findings from Tulane University showing a possible link of hyper-mobility to the MTHFR gene and its related deficiencies in folate?
This was interesting to me, because it appears that there can be deficiencies or high levels of folate coinciding
Thank you doctor. This is so important for our family! Do you know any Neurologist in Puerto Rico that has your expertise in this area. My father is in hospital due to a stroke and infection in the blood. All the few doctors available say they have knowledge of MG. But in positive not your expertise! Do you have a number that our family may call?
Sorry to hear about your father. Unfortunately, we do not know of anyone.
Hi! Do you see anyone through virtual visits? There are no doctors here who specialize in this
Yes, we do. However, medical board regulations require that we see the patient in our office in person once first and once annually for ongoing care.
I don’t pass the beighton test because my joint hypermobility is mostly in my shoulders, neck, back and elbows. I meet the second and third criteria for hEDS (I also have a lot of the comorbidities of HSD/hEDS). I recently saw my rheumatologist for a HSD/hEDS assessment and he said yep you’re definitely hypermobile but you don’t have hEDS because you don’t pass the beighton test. But I’m a bit confused because I thought the first criteria was having generalised hypermobility and the beighton test was just the most common screening test for hypermobility?
I appreciate what he says in this video about it being very arbitrary. I had one doctor say to me that I likely don't have EDS because I'm not equally hyper mobile in all of my joints. But this doctor makes it sound like the hypermobility can affect different areas in different ways and degrees.
What is the effect of aging on a hyper mobile person?
I meet all the criteria Beighton score 9/9 then I meet criteria for A and C. But for criteria B my rheumatologist said that because my parents don’t have hypermobility I don’t meet the criteria even though my daughter has it. I’ve been told that it’s HSD and fibromyalgia 😢 don’t know whether to seek a second opinion and take my daughter this time.
what would the difference in diagnoses be? my rheumatologist said that the treatment is basically the same whether it's hEDS or HSD.
@@youdeservemusic yes I guess you are right
When m daughter was an infant, a chiropractor said she had “very loose joints”. Believe me she now 38, could pass most of the tests. I will pass this info on to her. Is there any medical “treatment” in conjunction with a syndrome?
I, also, had one sister who very “double jointed”, a term used in my family. The other five sisters, including myself, were also Hyper mobile but not to the same extent.
if we find sign and symptoms of eds but there is no hypermobility..
then, what could that be ?
Unfortunately, without seeing you and seeing your records, we wouldn't be able to know for sure. Please reach out to us on our website using Klara; a HIPAA-compliant way to communicate if you'd like to inquire about scheduling.
So basically if you are 5 points or more for HDS you are an alien specimen.