We provide expert diagnosis and treatment of selected diseases, to include ALS, CIDP, Ehlers-Danlos Syndrome, (EDS), GBS, Neuropathy, Myositis, Muscular Dystrophy, Myasthenia Gravis, POTS & other dysautonomias. Dr. Saperstein has over 20 years of experience diagnosing, treating and researching these conditions.
Wow, I've watched 20 RU-vid videos on MG and this is best yet. I have NOT been formally diagnosed yet, but MG sure seems close to my experience thus: As 66 year old make, a year ago I started with only a periods of Hoarseness (dysphonia) every afternoon for a week or so, then it would go away for a month, and come back for a week or two. Then 5 months ago, after being exhausted from yardwork outside, the very next morining I had minor numbness/tingling in both feet, weak legs, both legs and imbalance, and weeks of hyptic jerks (leg muscle spasms) lasting 2 seconds, one leg or the other, every 20 seconds for about 30 minutes as I was falling asleep. Today, the hoarseness still comes and goes, the hypnic jerks are only weekly and more mild, but legs are weak e.g. need a railing to climb flight of stairs and mild feet tingling. Two recent MRIs indicate no Sciatica, no Stenosis. What I mentioned are (so far) the ONLY symptoms. In some 5 months my imbalanced walking (shuffling really) with weak rubber legs is just as severe as the day I awoke with this -- not worse and not better. No antibody blood tests yet. More MRIs planned, but MG seems best match so far.
So grateful for this message because when I say that pain is all day everyday the doctor looks at me like I’m crazy or exaggerating. When pain becomes a fact of life, you find ways to keep going even though it hurts because you must in order to survive. It doesn’t mean there isn’t pain, it just means I’m able to persevere in that moment.
Please tell your patients about U.S. Pain Foundation! They have so many amazing free support groups for people with chronic pain! The groups are through zoom. The leaders are people with chronic pain as well. ❤
Please continue. There’s surprisingly quite little content about pots especially in regards to salt intake, how to do it, what it means, etc. I struggled to find the information myself, so keep going
I have all mentioned symptoms. Headache, sensivity of light and noise has appeared within the last 6 months. The tinnitus/ringing sounds are hard to ignore at night, I have to have background noises to be able to sleep. I often half choke on food, and there is a constant lump in my throat. I've began to fall over randomly. Had a MRI done in 2015, and my neck didn't look good then. Finally - after 9 years - i'm getting a new MRI. Been at my doctors about it forever. Finally! I feel both relieved and nervous. They are simultaneously going to check my lower back again, it didn't look the best then, and now it's hellish, I can't sit in a car for more than a couple of minutes - my back is freaking out for days afterwards. Been working with my physiotherapist on both my neck and back, without any results sadly, but after the MRI we know the current status. Now we are focused on my foot that I had surgery on twice within 9 months, bad case of pes planus. Both feet has/had totally destroyed valves, and the tibialis posterior tendons has ruptured. Ouch! Having surgery on the other foot next year. You never know what EDS are up to with our bodies...😅 Sorry for the rant.
Thanks for your feedback. This is an older video. After other previous requests, we stopped using background music and have remade this video. It's in our playlist.
Why they give meds to those with this…. Makes no sense since sensitivity will most likely increase from chemicals. Having chiari just ruins life with all this risk worry. I got Vimpat was my gift. Chiari ignored. I have epilepsy only, according to the Canada health system lol my chiari easily visible on my MRI.
It's not working for me. Drained the blood inmy lower leg, compression wrapped it for 3.5 days and when I took it off today, it was full of blood again.
I think I have EDS , I definitely have CCI and multiple injuries in the spine along with a brain cyst in the arachnoid membrane. let’s just say, I’m fkd up. The # 1 best treatment I’ve ever had for any of my symptoms related to this is A low force CHIROPRACTOR who specialized in cervical ATLAS ORTHOGONAL style treatment and cranial sacral therapy.
The people that depend on the internet also need Drs like you, but Drs like you unfortunately do not take insurance. Mystery disease cures are for the rich only.
Interesting. Just started to rely on Advil heavily as I traveled last week and walked so much and all my joints hurt. My MCAS must manifest in prostaglandin release not histamine release! Cuz my joints are on fire!
Seems like a waste of time to chase numbers. Maybe easier/cheaper to see if the stabilizing meds like Singulair or ketotifen (or both like I'm on!) help.
I have EDS and a neck traction has made me worse. I am not sure if traction Is the right thing for hypermobile patients, maybe it is even dangerous. I have a lot of pain now , plus almost all these symptoms
As someone with HSD, thank you for this. This explains this perfectly. I think I get a little frazzled because I feel like we are under represented and not even GP understands it at times. Either way, both conditions suck.😊
I am glad you mentioned that about how some people seem crazy before the testing came out. And now I really think that doctors are too quick to diagnose for fibromyalgia before they test for SFN, which is so important since the symptoms are almost the same.
The most impressive moment, when you can give a patient the idea what is happening to him, that his impressions and feelings of the own body are real and not of psychosomatic origin. Seeing over a hundred patients a day… by statistics there must be at least 17 amongst them affected by MCAS. Even more when working in a field that is a key area for MCAS patients.. thanks for the video 👍🏼🙌
I wish more people would stop arguing with me and my dying saggy arse 😂 I'm 54 and was lucky enough to cough and dropped dead from bleeding to death after my spleen blew up.... yes from doing it in an awesome hospital who are STILL, they dint know how i fake being well but I'll do it to I'm in my cardboard box, then buried in a secret location, no headstone... just my favourite bulbs and I'll feed them every year until I'm part of them ❤ The people who love me will know, but my haters will never know!!! EVER not urinating on me like someone threatened to do! Got to love that blood family good job .... Not the place, I'll stop and be a good 54 year old female with zero cares and i know the grass doesn't get any greener. I've seen most of this planet with my own two eyes and climbed up a few mountains worldwide also lived all over the planet thanks to my military life, shame keeping their blood pure in my family literally meant they married their cousins to keep the bloodline pure 💔 😢 Just like the Egyptians did and killed themselves off with bad, mutated genetics passed down the family bloodline getting worse like some freaky GSD experiment 😅 Sorry, don't left brain damage and very little filter Stay safe and keep educating, never hate as not worth the belly ache 😊
It's not clear where you are located but we do see patients from out of state and even from out of the country. Please reach out to us if you'd like to inquire about scheduling on our website using Klara. Otherwise, The Ehlers Danlos Society has a list of providers by region, state, and city.
I just got diagnosed with hEDS a few weeks ago. One point which is never mentioned is I sometimes have a "low" body temperature of 35,4°C for example. In this time I always feel hot like burning inside and very weak but without sweating (I usually sweat a lot!). Can this be linked to hEDS as well?
I'm really more intrigued into breaking down symptoms and the effects of living with EDS versus HSD. I have EDS and my daughter has HSD(could be pushed up to EDS awaiting more test results) yet she presents with far more severe symptoms and comorbidities than I ever did at her age. Supposedly HSD is a less significant form of EDS so its difficult to wrap my mind around.
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).
