Diagnosed with EDS, Now What?

By Amy L. Schulze

“This is a set of advice that was compiled by a group of patients. It is meant
to help with issues other than the formal medical advice you will receive from
various doctors and therapists. Do not take this advice for something other than
friendly advice from those that have more experience than you do right now.

When a medical students is in school they are taught, “When you hear
the sound of hooves, think of horses not zebras.” Well we are the
Zebras. We look like many, many other common and not so common
conditions.

Medical Community

At the beginning you might feel that the medical appointments might never end.

If you are an adult and recently diagnosed, you might feel many different
emotions such as relief that you are not crazy! Something is wrong despite what
other doctors might have said to you for years.

It is important to let all of your doctors know about the diagnosis, be prepared
that some of them might not know what EDS is and give you incorrect
information.”

 

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    • So grateful for your blog. I’m honpig it is still active as it seems such a great resource and I would appreciate your input on our situation. In our case, my six year old son was recently diagnosed with EDS type 3 after we suspected it and requested testing. in my research, I found your article on and became somewhat concerned. My son was followed for a a couple of months at birth for what was considered a somewhat small headsize. Soon after, he was followed for what was considered a large head circumference. While his height and weight were always under 5%, his head grew to 95%. While his height and weight improved after we had him diagnosed with celiac disease at age 2, his head size has remained on the large side. I was concerned about this and when he was about 2 and half eventually ended up at a neurologist, but stopped short of an MRI as it was stated that his head was within normal’ range and I was concerned about giving him an MRI at that age. With his new diagnosis and your article, I’m thinking I may have reason to be concerned again. While he has been quite conversational since about age 2, and is considered intelligent, he seems to struggle at times with memory issues. An example, while helping me put dishes away, he went to the wrong drawer, and then, a little embarrased, kind of laughingly told me he forgot where the utensil drawer was. When he was younger I remember he’d forget some of his favorite character names. Bob the Builder comes to mind. He would forget obvious things that made me think twice at the time. It may be totally normal for kids his age, but he frequently forgets where he put things just a few minutes before, etc. I don’t even know if they have what is considered normal head circumference measurements beyond age 2 or 3 when they seem to stop tracking it. But I’m wondering if we should look into the possibility that you raise in your article of hydrocephalis as a side effect of EDS Type 3. To quote your article: External Communicating Hydrocephalus, often in conjunction with CCSVI(chronic cerebrospinal venous insufficiency), is hypothesized as the cause of the constellation of cranial nerve signs and symptoms, endocrine abnormalities, personality changes, cognitive decline, extreme fatigue, left ventricular diastolic dysfunction and brain atrophy in the Ehlers-Danlos Syndrome patient population.’He’s also pretty irritible at times, tires easily and doesn’t tend toward a lot of physical activity. You mention delayed milestones and he was about a month late’ for most of his milestones. Your research seemed to be with mostly adults. I obviously would have concerns about anything that might cause a cognitive decline in my young child so would not want to discount this, if it is indeed a possibility. On the other hand, would not want to introduce a drug, which you indicated helps in this situation, if it is not necessary. My sense after our initial visit with his EDS doctor was that this was a joint issue. I’m surprised that it can also potentially affect cognition eventually. Obviously we would want to do whatever we could do to prevent this symptom or side effect if at all possible.Would you have any suggestions of how we might pursue this to find out if he does have issues with CNS fluid drainage due to EDS? Sorry for the length, but you mention mast cell disorder in your artile also and I’ve hit on that previously as possibly contributing to his asthma (before the EDS diagnosis) and I’m wondering if there has been any research or you have any knowledge of whether EDS patients with asthma might be more likely to benefit from mast cell inhibiting asthma drugs than the general population?Thank you for the wonderful service your are providing.

      • admin

        Do you have a EDS Support Group in our area? Do you want to create an EDS support group in our area?

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  • Hi Effie and Linda,Linda, from what I hear, Dr. Grubb is amazing and he unntsreadds the link between POTS and EDS. A great choice! And good for her to wear her collar! I was rear ended TWICE this year, but both times I had on my collar. Whew!Effie, what a great question. I hope your doctor checked your overall testosterone AND your free testosterone . Mine goes all over the place, just like all of my other hormones, including growth hormones. Our guess is that the feedback loop that goes through our messed up brain stems is not functioning properly, but we’re still guessing. My pituitary on an MRI is squished, so there’s some evidence of pressure on the pituitary (and maybe the hypothalamus?), likely from cervical instability. I would have your hormones (the whole panel) checked fairly often to see if it is stable or just crazily up and down, which is harder to treat. I’ve just kind of learned that if I get facial hair (really!) or my hair on my head starts to fall out, I need less! Crazy, I know!Thank you for your kind words.Diana

  • I am soo sorry we missed out on your lreutce in houston, there was so much to see.My dtg. the 15 yo in the w/c sat up tooo long fri. and took a dive off the couch face first, she was fine,the BP was low and pulse fast.She is EDIII, 9/9 on beighton scale,S/P fusion,decompression, and reflux sx.We now know POTS is also a major problem for her, its only taken 4 yrs to figure that out.We are waiting to see a specialist for the tilt table test,she goes to school 1/2 day and has a aide with her at school.Do you know anything else we could try?She is on salt pills and forced fluids, atenolol 50mg for tachycardia. LindainFla

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