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MaryInVaParticipant
Just to update. I’m now diagnosed with Heritable Disorder of Connective Tissue, NOS and also on mast cell activation treatment. Doing much, much better although every day there are challenges and pain.
Thanks for all the helpful info you all shared with me. It was very helpful. You’re the best!
Mary
MaryInVaParticipantThanks. I went out and bought a speaker for my laptop just because I wasn’t able to hear anything on your vidoes, but now can try it. I’ll do that this weekend. Sounds like a good tip. I’d love to be able to adjust my own hips back into place when they’re just a bit off. I don’t really think this is an IT band issue but I’m going to google and see what I can find. I don’t remember there being a popping sound when I’ve popped my hip back in place, just enoumous relief of pain and tension and could walk again.
Mary
MaryInVaParticipantWhat a nice husband you have! I actually broke down and went to the chiro yesterday because my hips and low back hurt so badly. It worked. Almost no pain there today, which is an even better response than usual so I must have been considerably messed up. Just the rest of my body is still hurting but that’s easier to deal with.
Blood pools in my feet when standing too, or when legs and feet are dangling, and the doctor doesn’t know why. She said she’s never seen anything like it. Her first response was, “That is definitely not normal”. I’d already had Erythromelalgia for several years but that causes an entirely different shade of redness in the feet with hot skin, lots of pain and different triggers.
MaryInVaParticipantDr. 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
MaryInVaParticipantI love my temperpedic mattress and pillow, my Relax-the-Back memory foam pillow (made for heads, but great between knees), ForeverCool pad (especially the big one) from Walgreens’, my starbuck’s insulated cup for cold/frozen drinks, my tiny 4″ fans, cotton clothes, my SAS “huggy” sandals and Reef unisex convertable sandals and my sage microwaveable neck wrap. -Mary
MaryInVaParticipantThanks Dr. Diana. That website does look like it has some very helpful info. I can’t see you videos with my laptop, or most other people’s videos. Not loud enough sound. May need to buy speakers or something. I see the neurologist this week, so I’ll see what he thinks of these possibilities. I appreciate the “hug”. Needed it.
MaryInVaParticipantHi. New here. I recently (finally) found out that because I’m allergic to Formaldehyde I have to avoid Aspartame. But I was already pretty good about avoiding it because I suspected it made me sick. Now I’m very careful.
I get tremors too, and never had any idea why, so you have all given me something to think about. I suspect it does have to do with somehow overcompensating when holding things. A couple of times I’ve also had the delighful experience of reaching for my paper cup at Starbucks and accidentially crushing it, while full, which makes your drink explode very dramatically. The second time if happened I was being extremely careful to pick it up gently, but it happened again anyway. I couldn’t judge the force of my grip. Maybe that’s kind of like clutching things too tightly and ending up with tremors afterward.
Mary
MaryInVaParticipantHi. I’m new. Sorry this will be long! I don’t know if anyone is still reading this discussion, but it sure is interesting. I’m not diagnosed with EDS, have only been told by a geneticist that I may have something “similar to EDS”. But I am diagnosed with dermatographism, thyroid nodules which eventually made me hyperthyroid (was hypothyroid in past), allergies to lots of meds, chemicals and possibly some foods (definitely milk/lactose, also cocoa butter which is in chocolate-so sad!), Fibromyalgia, Erythromelalgia (the most painful), Raynaud’s, Glaucoma, Dry Eye Syndrome, GERD and IBS (may be gastroparesis), cutaneous vasculitis, frequent upper respiratory infections, heat and cold intolerance and lots of other issues.
The dermatographism was always present, even as a kid, but became a real problem one year when I had constant sinus infections, fungal or candida infections all over including my tongue (ugh), and was losing weight like crazy. That was all diagnosed as being caused by an inability to digest fats properly, leaky gut and chemical sensitivities.The allergist told me that mild dermographism was very commonplace, 30% of the population. Mine was “moderate” and is now mild (on antihistamines). Getting my hair cut used to cause welts all over my neck. And I always warn people taking blood or giving me injections to expect a wheal, so they don’t panic.
I’m from a tall family too, but I’m the short one at 5’6″. My sisters, mom and grandmother were all 4 inches taller. The men are really tall. One nephew is 6’6″ and has Asperger’s in addition to unusual physical problems. A great niece who is only 15 is 6’2″.
Wish I could find an EDS specialist in Richmond or charlottesville VA. I am considering seeing a Mast Cell Disorder specialist here, but I’m nervous about not being taken seriously and I’m sensitive to Dr’s with that attitude.
Mary
MaryInVaParticipantWhen I saw a geneticist a few years ago she was very interested in the “muddy gold” area around my pupil, which looks a little like yours, but is more of a ring rather than a starburst. She just made note of it, didn’t know if it was significant.
She didn’t diagnose me except to say I may have something similar to EDS (rather then my Fibromyalgia diagnosis) and my Erythromelalgia (burning feet hands and ears) may be the inherited type.
I wonder if your copper levels being temporarily high caused the color change and if it’s permanent.
Mary
MaryInVaParticipantI’m not diagnosed with POTS, but had just read a mention of high Tryptase and Mast Cell Disorders. I think I read it on a Mast Cell forum. See this link.
http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1307797360
Mary
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