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I have Dercums and saw Dr. Herbst in 2012 or 2013. All of her suggestions and findings were so life changing. Water therapy, lymphatic massage, healthy anti inflammatory diet, lymphatic compression suits and compression garments are all very, very, helpful. If I hadn’t implemented them long ago I can’t imagine what shape I would be in today. When I am super diligent with all these tools I feel so much better. When I get lazy , especially with eating sugar and carbs I have painful flares. She is so knowledgeable and compassionate to these disorders that have so much stigma in our society. Thank you Dr. Herbst.

I love your solo episodes and wouldn't change a thing. The questions you are answering are so important that I've made note to tuck this episode away to refer to again later. With gratitude for your help with all of these things!!

Thank you for sharing EDS awareness! I was diagnosed with hEDS in April 2024, and decided to start a RUclips channel sharing my story and local resources for people who are going through similar situations. Sending positive vibes and sunshine your way. ~ Bethany

Hear how Lauren went from being in a wheelchair to living in Kenya doing mission work in this episode. ruclips.net/video/HVsSrPB7O3U/видео.html

Can you have more than one type?

How do you get diagnosed with tendonitis? Which dr diagnoses this and how do they diagnose it? I have had pain for 5+ years in various body parts, and they never tell me what it is. They just send me to pt, and I'm really tired of not knowing exact what it is.

I wish I could see Dr Hansen! I’m laying down right now due to horrible pain from ribs! They keep sending me to a OM doctor. Only gives relief from for a day or two! Muscle spasms, electrical shock. There’s no help for me in Michigan. I can’t even breathe without pain!

Fiber is nothing but waste product. No nutrients. We just poop it out. Steaks may take longer to digest but it's full of nutrients for us. This woman is so off. I can't eat very much so I need all the nutrients that I can get!! Geeze. So, I cut out all the junk food. All processed sugar and flour, seed oils. I eat high protein. A few vegetables. But it's ridiculous to say we need high fiber.

Now my oelvic pain started hellish at 17 severe anal pain then cfs diagnosed at 43 heds diagnosed fybromyalgia autism adhd list my mum to severe ms heds obvously autism to realy is poor quality health care for us gives us PTSD

Omega 6 fats are highest in seed oils which are soy, corn, canola, peanut, grapeseed, etc. It's funny that Dr Herbst supports coconut oil when it has the highest amount of saturated fats of all commonly consumed fats, including lard and tallow. Animal fats that have not been highly processed (that are just rendered at home) are perfectly uninflammatory. The problem is deep frying because the fats are oxidized and become more inflammatory so avoiding deep frying in any oil is important. Roasting, sauteeing, steaming and boiling are healthier cooking methods. Stir-frying with fresh oil is ok as well

Thank you so much for your personal touch and empathy for your patients and public.

What other questions do you have about pelvic floor physical therapy?

I think fibro and ankylosing spondylitis should be included in conversations like this. Gi issues, costochondritis, and many other symptoms are very similar.

An unrelated question but I have a new question about why my hands would suddenly turn bright red and have white blotchy spots like the Piezogenic bumps on my feet. My hands don’t seem cold but I was using my hands a lot yesterday and the symptoms appeared in middle of night.

Emily, do you find that foot pain and Achilles pain can be linked or caused by pelvic dysfunction? Great chat ladies. Thanks for sharing.

Have you ever had an embarrassing “oops” moment?

So would SRS cause back pain on both sides. Higher up? My physical therapist said my back pain is where my 10th rib is slipping

Thank you for this, very informative. Re tinnitus, I find that I can adjust the position of my neck and head and it usually stops it. I presume then it comes from nerve impingement in my neck. I also have olfactory hallucinations which respond the same way. The gifts of EDS 😂

I was constantly sick, had tonsillitis and respiratory congestion. The doctor told my parents I was allergic to the histamines my body produced. I had my tonsils removed and I did much better.

spd causes rhe central sensitisation feim autism adhd

Listened on Spotify! Please thank Lauren for her openness and sharing such a great podcast! Thanks to you too Linda. Xxx

Oh my. Recent ‘tear’ upon chiropractic. Nerve straight to left breast became excruciating almost immediately. So many signs are becoming so apparent. Question: is Eds progressive ??

I had pain in my back/hip/leg for two yrs. Had multiple mris and multiple drs and not one of them mentioned tarlov cysts. One of them pulled up my mri and I saw something that looked like a big peanut in m sacral area. He said it’s a tarlov cyst but they’re asymptomatic. Also had another dr tell me that there are no nervous down there. I started my own research and came upon Dr Feigenbaum. After watching some patient testimonials that sounded like my story, I told my whole I knew what was wrong and we’re going to Dallas! I had the surgery in 2015 and I’m feeling great!!

Dr Seheult epitomizes what a real doctor should be. Highly knowledgeable, highly motivated to treat his patients in the very best & beneficial way. I can't thank this man enough, he is so intelligent, so accessible with his knowledge which he relays in such an easy manner. He comes across so much more knowledgeable than any other doctor i have ever listened to. I would travel miles to be his patient. Grateful to this doctor ❤❤

The link to her other website listed in the description doesn't work. At least it did not work for me....if you had written out the long title of the location where the chiari and mcad clinic is ....we could look it up but when link is dead...it's hard to go look for it again.

You guys should have her back to discuss all her recent findings with HSD/h-EDS ppl and things ppl might want to bring up with physician to be screened for...the why your mast cells are misbehaving. Here is a link to vid that was on her clinical paradigms website (it is for a french group whereby they are simultaneously translating into french so a bit of a delay...but unlike her normal presentations...you actually have time to read the slides and actually see them other than switching btw her head and her slides. ) ruclips.net/video/JwQjPg9wwu0/видео.htmlsi=wo06_zhWIYS_d3qy

If a physician orders the 24 hr urine test (the one she refers to that needs to be refrigerated throughout the day and until it is in the hands of the lab), should a patient try to trigger themselves in order to "show the mast cell chemicals (prostoladin ?) that I cant spell. The second part of the diagnosis is the need for data to show the mast cells are misbehaving...since you can choose when to do the urine test...just curious if it would be wise to trigger oneself sometime during the course of the 24 hr urine collection period. Esp since most times we get the trypase blood test in the dr office..for most people it is normal unless you are triggered. (Most ppl try to avoid being triggered...esp at the dr office.) Anybody know the answer?

About 7 months ago I listened to one of yours podcasts, and the guests was Dr Gupta, who has the brain retraining program. I ended up going with Dynamic Neural Retraining System, another brain retraining program. It is wildly successful for me and others who were diagnosed with debilitating, chronic, soul sucking conditions . I have much more independence and mobility than I have had in years, my gastroparesis is gone, after 10 years of losing foods and taking relatively ineffective medications, I can eat the way I used to eat, like a normal person. My lower back has been gradually improving, and I don't need a chiropractor nearly as often as I used to. I don't roll my ankles, a number of foot issues have resolved, anxiety and worrying have diminished considerably. I can now stand and do dishes, in fact, I no longer need a mobility scooter in the house. For me, this this program is one of the most effective and far-reaching approaches I have ever tried with respect to ED symptoms and comorbidities.

Have you ever felt dismissed or not believed when seeking care for your symptoms?

Great video. Shared. Thank you! I have a 1.5 to 2cm Tarlov cyst at S2 that traverses S3, Intracranial Hypertension, tentorial dAVF w/cortical venous drainage, herniated cervical, thoracic, & lumbar discs, 3 TIA's, and a stroke at age 37. I have advocated for Tarlov cyst patients for almost 2 decades. Radiologists need to stop trivializing and dismissing Tarlov cysts! Thankfully, a radiologist in Ohio mentioned it in an MRI. I began researching my symptoms, and spoke to Reta Honey Heirs, a nurse, advocate, and Godsend for Tarlov cyst patients.

Das why havent you published any stats on your injection therapies for Ens? Its been over 11 years.

Many thanks for presenting this fascinating research!!

Thank you Linda and Dr Raj. I have heard of a patient self-medicate with liquorice to manage PoTS. I would love to be able to get your and Dr Raj’s take on this. Best wishes, Audrey. 🙏

looking for the links offered in session? where can I find them please?

Have you experienced symptoms related to dysautonomia?

Can a doctor perform surgery to remove Tarlov cysts within the framework of MSF?

Thank you! My GP thinks I have POTS but doesn’t feel comfortable diagnosing me herself, so I’m waiting on a neurologist consult/tilt table test (I printed out the 2020 Canadian cardiology paper on POTS Dr. Raj mentioned and brought it to an appointment with her but she said it was still too convoluted for her), and she’s often just said “drink lots of water, add salt”. I love the “prescriptive” idea for non-pharmaceuticals that Dr.Raj has.

Diagnosed Meningeal cyst as a 60 yo male. A nerve flare up would render me almost totally incapacitated. Was in very good shape pre-op. Dr. Feigenbaum performed surgery to remove cyst. Two weeks post-surgery was walking four miles every other day wearing a 30 lb weight vest.(Not recommended for everyone). Highly recommend Dr. Feigenbaum. No surgery related side effects. Three months post surgery and believe I'm close to 100% recovered. Setting in certain configurations can cause some discomfort. However, I did drive for 10 hours recently with no issues. Hope this helps!

Thank you for all of this information! You are making a difference in the lives of many!

Flonase gave me a dry, crusty, bloody nose when they prescribed that for me long ago, so I couldn't use it. I had lots of ear infections as a child in the 70s, so I had a tonsillectomy that I don't even remember. I kept getting sinus infections that didn't want to heal, and I couldn't really breathe through my nose, so I got a turbinate reduction and deviated septum repair in the early 2000s. I stopped getting sinus infections all the time and had less mucus bothering my asthma. I take antihistamines daily and use a steroid inhaler for my asthma. I use a nasal cannula at night, so I do get some bloody crusts in winter. I use the saline gel Ayr to help with that. When the air gets really dry in winter, I use a warm air humidifier in the bedroom. I used to teach and had polyps on my vocal cords. I was given speech therapy and used a microphone during lectures. I don't remember them saying anything about me using the wrong parts of my vocal cords. I think they said the cords were slamming together too hard or something and irritating them. That was almost 15 years ago. I have long had itchy ears. I developed tinnitus, apparently after the first COVID vaccine. There is a range of tones that I couldn't hear in a hearing test that seemed in the range of what the ringing "sounds" like. They tested nerve conducting and that seemed fine. I am interested in trying the drops to see if it does anything. Thanks for explaining the brain's attempt to interpret the absence of a signal in the middle ear and a possible way to address it. I only learned about EDS this year and sought and obtained diagnosis (HSD).

If most mcas food triggers/allergies are not ige mediated, does that mean they won't cause anaphylaxis or love threatening symptoms? That's what scares me about testing foods.

Have you tried keeping a symptom journal?

What about latex-based food allergies?

I have all that and just got diagnosed for Alpha Gal 🎉 Had MCAS my entire life and now an allergist is challenging that diagnosis. As a patient I know I have all 3 and didn't notice the progression of Alpha because the symptoms are allergies and joint pain. I just thought I was progressing. It deserves honorable mention and doctors who can rule that out.

What’s your opinion on using the healing peptides ( BPC-157 & TB-500 ) my mom stuffers from this condition. I myself re injured my knee and had match I refused to back out so I took these healing peptides for 5 weeks and my knee was been felt better! Of course these issues are not alike but I wanted to hear what you’re opinion on this would be and if you yourself have knowledge on these particular peptides.

This is me from birth, 100%. When I had my tonsils removed, the doctor told my mom they were the worst he's ever seen. (This was about 40 years ago) I finally had sinus surgery & tubes in my ears at almost 40. I still have a ton of issues, including vocal cord dysfunction. I also have sleep apnea, but it's central, not obstructive. Nobody talks about or seems to know anything about it. Doctors wonder why I don't use a CPAP. I'd love to see some info about central sleep apnea from you. Thank you for everything!

Some of us didn't need to learn that flies could lay eggs in our sinuses 😅 add that to my list. Seriously, great interview!

Cant believe you talked about collapsing around ribs! I have been having excruciating pain around ribs. My PT agrees it's collapsing and I've got exercises. I have been experiencing SOB that maybe VCD and GERD v could this be related?

Yes, tonsil stones, sinusitis from age 13, and tonsillitis often on throughout life. Sleep apnea, possibly at certain times in my life particularly after three disc cervical fusion. Muscles of throat didn’t respond well for years after that. Thank you for this podcast❤

I always wondered why I get tonsil stones! And I’ve had a history of tonsillitis as an adult. 😮