Ehlers Danlos Syndrome (EDS) & HSD, calling all types!

Hi Colleen. I didn't know you had responded... thanks for doing so. I'm having cognitive issues right now and it is difficult for me to organize things. I suspect a chiari malformation problem (was diagnosed with this 11 years ago, but not offered any care for it or told it could create problems). I have a long list of EDS and Marfans symptoms. I'm trying to organize all the data. I am seeing a neurologist in the Twin Cities later today. It does not appear that Mayo doctors want me as a patient.

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@sallysunshine, I'm glad that you have found a specialist with whom you are comfortable. Hopefully the Twin Cities is also closer for you and that you're able to confirm a diagnosis and treatment or management plan.

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I'm using a combination of doctors. Some Mayo doctors are terrific. I wanted a neurologist treating me who actually talks to me, meets me, and answers my questions. Not just a random doctor who looks at a test result and then writes a report. I'll do my best to avoid any further e-consults at Mayo.

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I'm using a combination of doctors. Some Mayo doctors are terrific. I wanted a neurologist treating me who actually talks to me, meets me, and answers my questions. Not just a random doctor who looks at a test result and then writes a report. I'll do my best to avoid any further e-consults at Mayo.

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In reply to @colleenyoung @migizii....if you are speaking of neurologists, I had an experience at Mayo that was very disappointing. The doctor did not listen to my needs and wrote a report that didn’t reflect the mountain of records he requested I bring, so I had to assume those reports were mostly ignored. The consult was approximately 20 minutes; no tests involved; for chronic migraines that had been going on for many years by the time I landed at his office. I kept on my journey and found the resources I needed. I have found Mayo to be wonderful for many issues, but that was my first experience and it took a number of years before I reached out their way again.

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Hi @wittmack, I moved your newest post to this discussion where you already connected with @healthhopefreedom @lisafl @lifetimepain @smbryce1 and others to see if they may have some thoughts on your questions about an overactive bladder. At 79 an overactive can be related to many things. Have you connected this with EDS?

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Hi @sallysunshine and welcome. Have you been diagnosed with Ehlers-Danlos Syndrome or is this being investigated at the moment? What symptoms do you have?

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Hi Colleen, Thanks for asking... I worked hard last night to get some of the symptoms compiled, and here is my list:

Assorted symptoms of connective tissue disorders (Ehlers-Danlos Syndrome, Marfan Syndrome, Chiari Malformation, Dysautonomia, and Related)

Migraine headaches
Neck and shoulder pain and stiffness
Chronic insomnia
Upper body weakness
Poor fine motor skills
Blurred vision
Fatigue
Difficulty thinking and concentrating
Weak hands - deformed thumb joints
Shortness of breath
Sensitivity to light, seeing floaters
Frequent and urgent urination
Hypertension
Snoring
Wake up choking
Pulsatile tinnitus (head pounds to beat of heart)

Marfan Characteristics

Arm span greater than height
Double jointed
Sydney line
Deep hip sockets

Autonomic and Cardiopulmonary Issues:

Reduced heart rate variability
Exercise intolerance
Sweat too much
Fatigue when standing
Shortness of breath
Cold hands and feet
Labile blood pressure
Hypertension
Fatigue
Shortness of breath
Pulmonary nodules

Neurocognitive Issues

Difficulty findings words
Short term memory loss
Working memory loss
Sensory: hypersensitive to light, sound, motion, touch
Aphasia - very slow to respond to questions due to need for processing time

Childhood Characteristics

Floppy ankles - could not be upright on skates as child
Developmentally slow as a child - socially, intellectually, and physically
Was shunned, excluded, and bullied as a child
Physically weak - I've never done a push up or pull up
Picked last for team sports - poor coordination
Came in last for all runs
Poor fine motor skills - sloppy writing
Inattentive - diagnosed with ADD as an adult
Fell asleep in classes - sleep disorder from early age
Double jointed legs with odd way of sitting
Lost track of time and took a long time to walk home after classes ended

Miscellaneous Connective Tissue Disorder Symptoms

Coat hanger pain in neck and shoulders
Migraine Headaches - flashing lights in peripheral vision, rarely pain
Clumsiness
Hypermobility joints
Abnormal thumb joints
Reynauds Syndrome diagnosed about 2005
Muscle weakness
Swolllen hands
Hair loss - eyebrows, arms, legs
Sacroiliac instability
Cervical spine instability
Peetechiae (broken blood vessels under the skin)
Thin, translucent skin
Thin, wrinkled, stretchy skin on hands
Uterine prolapse
IBS Symptoms that seem unrelated to diet - intermittent
Jaw dislocated numerous times in life, had to be reset by chiropractors
Severe stretch marks during pregnancy
Osteoarthritis
Knee pain
Subluxations of spine
Chiari malformation with fluid buildup diagnosed in 2010 at Noran
Sprained ankle took a year to heal
Neck stiffness
Memory problems
Blurred vision
Excessive sweating

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Thanks for being so kind and supportive, Colleen. It is much appreciated. I was turned down for the genetics appointment that I was referred for. I put this together last night, and then faxed it in to the doctor in genetics who does not want to evaluate me. I'm hoping he will reconsider, but I'm hearing from people in the Twin Cities that Mayo has been refusing to diagnose and treat people such as myself who have probable connective tissue diseases that have never been diagnosed and treated. Nobody seems to know why patients like myself are being refused.

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