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Hi Everyone!
I’m curious who out there may be diagnosed (or suspected) of having both MS and EDS? It looks like the two are related… Thanks!Yes I do.. I was diagnosed with MS in May of 2008 have had symptoms since age 6.. then in 2010 diagnosed with type 3 Ehlers Danlos Syndrome.. along with MVP.. and POTS. Fibromaylgia, Myasthenia gravis, Gastroparesis.
I have optic neuritis in my left eye along with EDS in my left eye..
My name is Lori and Im 34 yrs old.
Hi BeachSandAngel,
Boy, you have really been through it — as many of us mourn for what we’ve lost, we forget there are incredibly strong people out there like YOU who probably don’t even know what it feels like to feel “well”. Sending you a heart-felt (((hug))).
I am researching this overlap in conditions — there are more out there than you can imagine — I’m wondering if you have mast cell disease (or symptoms of it)? I had angioplasty for CCSVI, but the most help I got (besides the mast cell treatment) was Diamox to take pressure off of my brain. Do you have symptoms of high pressure (occipital headache going down your neck, ear aches, squishy ears, more symptoms with valsalva (straining),etc?
I do think that poor venous and/or CSF drainage is to blame for many of our symptoms and I know I was developing M.S. (my right side was dragging around an invisible toddler for one thing). Did you happen to look at my theory? I’m curious if treatment of your venous and CSF circulation may help you…
Thanks so much!big hug for you beachsandangel!
diana- if you are ‘impatient’ to try and find more peops with both MS and EDS dx- I could send you links to other forums where I have encountered peops with both dxes- they are quite rare though… and there seem to also be peops with lupus&EDS;/ and families where one has EDS, another lupus…
and there are quite a few EDSers where MS has been suspected due to symptomology (even after EDS dx/and by EDS specialists)- but tests didnt show it-
and I so remember one post where apparently some EDSer’s myelin sheath was ‘mechanically’ damaged -due to wrongly moving bones literally rubbing it away… ?????… also bringing MS typical symptoms…
xxgHi Bearcat,
Me? Impatient? 🙂 Eager is the word I’m searching for. There actually seems to be a plethora of families out there with an amazing variety of neurological challenges! I am certainly interested in common links, and am especially focused on MS and EDS right now. But my mind is always working toward that next step! I’d be grateful for any group you could point me to! Thanks so much. 🙂hi again,
sorry I’m atm v busy =also v pained and exhausted so I cant search for the particular threads/posts atm- in a couple of weeks hopefully I can.
but if you are v eager ; ) you could search for them on butyoudontlooksick.com/boards/index.php?sid=9946304f8cbfa632d85add2f04c6e53a , hypermobility.org/forum/index.php, ehlers-danlos.org/forum/
: ) xxgNo worries, Bearcat. You take care of YOU! For all listening? I love “Butyoudontlooksick dot com” Worth your time!
Dr. Diana. Your theory is so interesting. I was tested for MS years ago and tests were all negative. But if they still used the old “hot bath test” of years ago before MRI’s I might have been diagnosed. Can’t take a hot bath or my legs turn into jello and I can’t get out of the tub. I learned the hard way. Very frightening since I was living alone. And I had an aunt with MS who would have been diagnosed in the 1950’s.
When gathering info from relatives for a geneticist several years ago I discovered I have many 1st cousins (had never met most) with similar symptoms to mine, who also have stumped their doctors as far as what their underlying conditions(s)is/are. They have widespread pain, abnormal sweating, episodes of tacycardia, fainting or near-syncope when standing long or from other triggers, episodes of poor depth perception or vertigo with falling and bumping into things, brain-fog, allergies, medication & chemical sensitivities, severe headaches or migraines, IBS or chronic diahrrea, GERD, Raynaud’s, recurrent infections, anxiety and depression, etc. etc. Many, many symptoms that they almost all share with me. There are several with Erythromelalgia (EM), including myself, which is supposed to be very rare and I’ve come across people online who have both EM and EDS. EM is neurovascular and involves abnormal vasodilation.
Among these cousins who have so many symptoms in common, the diagnoses include (among a few others): Fibromyalgia, POTS, Intracranial Hypertension (has a shunt), etc. Everyone was tested for MS, most were repeatedly tested for it but all tests negative. Most also tested negative repeatedly for Lupus and other autoimmune diseases. There have been several with serious lung problems including 1 pulmonary hypertension and 3 caught pneumonia and then lung collapsed (ages mid-30’s to early 50’s). 1 is diagnosed Bipolar and others have been suspected of it but it was ruled out. Some of the next generation who have similar stuff are diagnosed Bipolar. Several had hysterectomies, some very young.
My mother has been incapacitated for around 15 years and required facility care (disabled for 5 yrs before needing a facility) and the only things doctor’s could find in tests was mild hydrocephalus which they said was harmless and not the cause for her “progressive dementia”. Now that doctor’s know it is harmful, she’s physically beyond having a shunt or possibly even getting an updated MRI. She was diagnosed as Schizophrenic in her 30’s but psychiatrists always had doubts that it was an accurate diagnosis. She later thought she had a physical medical problem of some kind but no one believed her because of her mental illness diagnosis.
My father was a family physician and suspected marfan’s may be in the family but the most likely candidates were checked (including myself) and it was ruled out. No one’s been evaluated for EDS or mast cell disease.
I don’t know what we have, but it just seems to me that it could fit this triad of EDS, Mast Cell Disorders, Dysautonomia and maybe mild hydracephalus.
Please excuse any poor spelling or editing. I’m tired but had to post. -Mary
Hi Dr. Diana,
1st – thank you, plain and simple (I just want to give you a giant gentle hug right now) for everything you are doing: the research, the motivation of others, the hope you give, and how you inspire doctors to patients (all types of people) to reach beyond the accepted and into the realms of possibility for answers.
2nd – In regards to MS & EDS in my family… I can only give you additional information to chew on at this time, but here is my story in brief. I have Classical EDS, my husband (and brother) I believe to have Hypermobility Syndrome (EDS?), though they don’t think so even as I see the signs, their father has MS. Though undiagnosed our eldest daughter of 4 most definitely has EDS… hopefully will never have MS. We don’t know about our youngest yet. So, just an interesting tid-bit, but I will be very interested in what comes out of your studies. If my kids can assist in your research I plan to assist. I just haven’t had the time to read and print out the forms…. I know that I’ll be sending your their information for the head-circumfrance EDS research as soon as I get it from the doctors.
3rd – I could contact you possibly another way, but while I’m as it, what kind of doctor is best suited to (1.) held address the appropriate medications to get my sinus mast cells to calm down, I’ve only had partial success on my own; and (2.) what type of specialist would be best for looking at my brain MRI in relation to the Driscoll theory (my first ever neurologist just had me get one done- and it is potentially interesting).
Thank you,
ChristiHi Dr. Diana,
1st – thank you, plain and simple
2nd – In regards to MS & EDS in my family… I know that I’ll be sending your their information for the head-circumfrance EDS research as soon as I get it from the doctors.
3rd – I could contact you possibly another way, but while I’m as it, what kind of doctor is best suited to (1.) held address the appropriate medications to get my sinus mast cells to calm down, I’ve only had partial success on my own; and (2.) what type of specialist would be best for looking at my brain MRI in relation to the Driscoll theory (my first ever neurologist just had me get one done- and it is potentially interesting).
Thank you,
ChristiHi Christi, 1st — thank you! 🙂 2nd — THANK YOU!!! 3rd — the best docs for mast cell disease that I’m aware of are Dr. Castells and Atkins (partners). If you check out tmsforacure.org you’ll see a conference they have coming up, too. I’ll be there FRONT AND CENTER. For looking at the MRI? This is TOUGH. Basically, any doctor who is open minded is a keeper. I had to work on my neuro for quite a while. Dr. Fraser Henderson (neurosurgeon in Baltimore/D.C.) is toying with it a bit. It’s almost easier just to try Diamox and see if you respond, we’ve found. Hang in, Sweetie!
I had heard that Fractures,Coordination problems,Autonomic nervous system dysfunction and Low blood pressure are some of the common symptoms that are mostly observed in MS and EDS.But I just want to know what exactly is the similarity in MS and EDS.
I had heard that Fractures,Coordination problems,Autonomic nervous system dysfunction and Low blood pressure are some of the common symptoms that are mostly observed in MS and EDS.But I just want to know what exactly is the similarity in MS and EDS.
Hi Linda, I think we ALL want to know everything about the connections! Time and research will figure it all out. I have my theories and am informally “pilot testing” a couple of them. It’s looking promising… Symptom-wise, patients with EDS can develop extreme fatigue, weakness, intolerance to alcohol and other “triggers” (including stress, heat, exercise, certain foods, etc.). We can develop double vision, vertigo, dizziness, nausea, muscle wasting, endocrinology gone wild, depression, etc. Whew. Lots of overlap, and not just with M.S., but with chronic Lyme, chronic fatigue, “fibromyalgia” and again, I’ll just say “etc.” One of my missions is to figure out what is the same amongst us all and THAT should lead us to answers! Great question, 🙂
They have widespread pain, abnormal sweating, episodes of tacycardia, fainting or near-syncope when standing long or from other triggers, episodes of poor depth perception or vertigo with falling and bumping into things, brain-fog, allergies, medication & chemical sensitivities, severe headaches or migraines, IBS or chronic diahrrea, GERD, Raynaud’s, recurrent infections, anxiety and depression, etc. etc. Many, many symptoms that they almost all share with me. There are several with Erythromelalgia (EM), including myself, which is supposed to be very rare and I’ve come across people online who have both EM and EDS. EM is neurovascular and involves abnormal vasodilation.
Among these cousins who have so many symptoms in common, the diagnoses include (among a few others): Fibromyalgia, POTS, Intracranial Hypertension (has a shunt), etc. Everyone was tested for MS, most were repeatedly tested for it but all tests negative. Most also tested negative repeatedly for Lupus and other autoimmune diseases. There have been several with serious lung problems including 1 pulmonary hypertension and 3 caught pneumonia and then lung collapsed (ages mid-30’s to early 50’s). 1 is diagnosed Bipolar and others have been suspected of it but it was ruled out. Some of the next generation who have similar stuff are diagnosed Bipolar. Several had hysterectomies, some very young.
My mother has been incapacitated for around 15 years and required facility care (disabled for 5 yrs before needing a facility) and the only things doctor’s could find in tests was mild hydrocephalus which they said was harmless and not the cause for her “progressive dementia”. Now that doctor’s know it is harmful, she’s physically beyond having a shunt or possibly even getting an updated MRI. She was diagnosed as Schizophrenic in her 30’s but psychiatrists always had doubts that it was an accurate diagnosis. She later thought she had a physical medical problem of some kind but no one believed her because of her mental illness diagnosis.
My father was a family physician and suspected marfan’s may be in the family but the most likely candidates were checked (including myself) and it was ruled out. No one’s been evaluated for EDS or mast cell disease.
I don’t know what we have, but it just seems to me that it could fit this triad of EDS, Mast Cell Disorders, Dysautonomia and maybe mild hydracephalus.
Please excuse any poor spelling or editing. I’m tired but had to post. -Mary
Hi Mary, Your family sounds like the classic “family cactus” of mast cell and hydrocephalus and connective tissue disorders! It’s amazing how we see every condition you described in families with EDS. I hope you are able to review some of the videos and handouts here (even the one on “Biplar? Irritable?” is pertinent to your family. Do you need help finding a geneticist? A diagnosis would be a great place to start! The videos on hypermobile and classical EDS may be what you need to see if you may have EDS. Please let us know how we can help you! Big hug, Diana
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