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Mog the DogParticipant
Oh, I also learned that my unusual head shape (long and narrow) is called “scaphocephaly” or “dolicocephaly”. Wonder if it’s related to any of this stuff…
Mog the DogParticipantUpon closer inspection, there does appear to be a little head tilt but not enough to explain the asymmetry. Here is a picture of the slice that shows the largest section of the lateral ventricle on the other side:
It’s way smaller than the largest section on the right hemisphere.
Here is a comparison of the largest versions of the lateral ventricles from the sagittal view:
So, there is some asymmetry, but who knows if it’s relevant!
By the way, my neck visibly slants to the right, so that is possibly why one hemisphere seems to sag down in my skull lower than the other one when lying supine.
Mog the DogParticipantAfter much thought over the weekend, I cancelled the EEG. I was so horrified with the neurologist’s frighteningly incompetent listening skills that I really want nothing to do with McNeuro’s ever again. In addition, does it make sense to do two EEGs – one in the middle of the day at the neurologist’s office and then one done by a sleep specialist who will do it during the transition from wakefulness to sleep – the only time the symptoms occur? The only way it makes sense is if you are a doctor who is money driven rather than patient driven. She’ll get her profit from the EEG done in her office and then ship me to the sleep specialist. Uhhh, no she won’t.
So, I will get the MRI on the 28th and then take the results to a sleep specialist myself.
When they tell us to be our own best advocates in our medical care, they mean it!
MTD
March 14, 2015 at 4:11 pm in reply to: Hypermobility but not EDS, other fishy things and referral merri-go-round #5390Mog the DogParticipantSpeaking of curious doctors, I found a gem of a gastroenterologist who agreed to do a routine colonoscopy on me last year without sedation. (Can’t speak for anyone else, but the benefits of avoiding unhealthy sedation far outweigh 20 minutes of discomfort for me.)
I rolled over on my side to get into the optimum position for the procedure and then my shoulder popped out of the socket about the same time the doctor inserted the endoscope into my back end. The nurse saw me wince in pain, and I told her that I had EDS and that my shoulder had just subluxated. She informed the doc, and he got all excited and curious and full of questions about my EDS symptoms as he continued to snake all 6 feet of the endoscope all the way up to my appendix. (It took as long as Elton John’s tribute to Princess Diana playing on the radio to make the trip there!)
Following the procedure, the nurse could see the high level of pain I was in as I struggled to get my shoulder back into its rightful place in the socket, and she thought it quite curious that it was the most painful part of the unsedated colonoscopy for me.
By the way, it was also the most fun I have ever had during a medical procedure. Four or five of the staff members came wandering in to ask me what the colonoscopy felt like without sedation and the youngest of them got all excited and said, “I want to try it!” The doctor went into docent mode and pointed out all of the landmarks along the way. He took pictures of what he called all of the good “Kodak moments” and printed them out and told me I could post them on Facebook or make Christmas cards out of them. Heh…heh…heh…
So, there are indeed exceptional doctors out there. And, yes, sometimes we find them in the strangest places…
MTD
March 14, 2015 at 9:50 am in reply to: Hypermobility but not EDS, other fishy things and referral merri-go-round #5384Mog the DogParticipantI feel burned out and am afraid to advocate for myself any more because I don’t want to be seen as a mental case. But I’m really exhausted.
Hi Stray Tulip,
Mog the Dog here. You may not be able to get the answers you seek from the new doctor, but you can begin to feel more empowered to advocate for yourself. It’s a daunting journey, but there are paths through it that are much less thorny and scary than the ones on which we sometimes find ourselves wandering and lost.
As far as the fear of being labeled a mental case goes, if a doctor wants to label your symptoms “psychogenic”, do a 180 and head for the door because you have found yourself on a dead-end path. No need to get angry at such docs and try to convince them they’re wrong. Just do the 180 and head for the door.
A good doctor is a curious doctor who finds unfamiliar conditions intriguing rather than burdensome. You might have to travel to find one. They are out there. I have met too many to count.
Sometimes just knowing that others are on a similar journey is enough to help us in the face of burnout and fear. I found that reclaiming my natural sense of curiosity helps snap me out of burnout mode. Try checking out a youtube video on the latest research in Ehlers Danlos Syndrome and watch passionate doctors being passionately curious about finding answers for us. No guarantees, but about 30 minutes usually improves my mood. Try it and see if you agree…
MTD
Mog the DogParticipantYes, unfortunately, I am living proof that those of us with EDS should forego the lumbar puncture. I had it done at age 17 several years before I was diagnosed with EDS, and I had spinal fluid leakage for several weeks (and the excruciating headaches that went along with it). Never again.
Mog the DogParticipantYes, I read your updated book a couple of weeks ago, and thank you! thank you! for all of your research and dedication to moving us forward in our understanding of how complex EDS really is.
I did take note of the section on IIHWOP and was thinking about it when the Mcneuro brushed off the idea of increased intracranial pressure.
p.s. Your book was a much finer read than the neurotolgist’s textbook, which I aptly renamed Everything you Never Wanted to Know About Neurotology!
MTD
Mog the DogParticipantOh, I forgot to mention that I do experience isolated sleep paralysis and occasional hypnogogic and hypnopompic hallucinations, but they are not even remotely similar to the weird stuff I am experiencing now.
Mog the DogParticipantYes, being the logical, analytical “old dog” that I am, I am always interested in delving deeper into what’s going on when the docs come up empty-handed. That’s how I discovered my platelet hyperaggregability problem after a 20-year undiagnosed journey through peripheral vestibular dysfunction Land.
After the UCSF neurotologist told me back in 1998 that chronic, disabling vestibular dysfunction was my cross to bear in life, I proved him wrong by reading his 1500-page textbook in order to know where not to look when I delved into a comprehensive Medline search.
Interestingly, it was the keyword searches “Ehlers Danlos platelet” and then “platelet vertigo” that led the way to learning that my platelets were clumping up and impeding the microcirculation to my inner ear. Plavix and aspirin cleared up all the vestibular symptoms and have kept them away for the most part.
So now with the weird head symptoms much worse, it’s time to return to research Land. I see that a lot has happened there since 1998!
By the way, I mentioned increased intracranial pressure to the Mc-neuro doc, and she instantly dismissed it saying she would have seen evidence of it in my eyes. Rest assured that I am looking for a new neurologist.
Can’t wait to see the results of my upcoming MRI.
MTD
Mog the DogParticipantSorry to hear you’ve been dealing with pancreatitis along with all the other stuff. That’s one thing I have not experienced yet.
I have had the ripping lower abdominal pain, though. I always chalked it up to EDS-related round ligament pain. If I am not careful getting up from a supine position, I get an excruciating tearing/ripping pain in the vicinity of the round ligament that puts me into a crumpled heap on the floor. It only lasts a few seconds, but owwwwwwwww.
MTD
Mog the DogParticipantI had a simple partial seizure a couple of weeks ago on the transition from wakefulness to sleep. It started with an agonizing full feeling in my head, progressed to abnormal sensory experiences and abnormal visual thought imagery and then resolved within a minute or two but left me really out of it.
The ER doc ruled out obvious tumors with the CT scan, but I was so out of it that I got dressed and walked out without going over the discharge instructions with the nurse. I also thought it was a good idea to make a 7-mile walk home at 2:00 a.m. after leaving the hospital. I walked 2 miles before spotting a cab at a gas station. The nice cab driver wanted to know all about my ails on the 5-mile drive home and wished me well. I figured it was more fun listening to my EDS adventures than driving drunk people around!
I have not been having normal brain activity during the transition from wakefulness to sleep for quite some time now. Hope to get to the bottom of it with the upcoming EEG and MRI.
MTD
Mog the DogParticipantMog the Dog here. Yep, we do need to create a new vocabulary for all the weird feelings and unusual pain.
I was just telling a friend this the other day when I had trouble describing the weird head symptoms I have been having. I knew he could totally relate to my experience if I told him my finger hurt because I just touched the hot stove, but I had no words to describe the hellish nightmare I experienced during the weird seizure-like head episode. The best I could do was tell him that if I could create the same episode inside his head, his jaw would drop and his mind would be stuck on, “You have got to be kidding me! How is it possible to feel this bad in such a weird way!”
Speaking of pain and weird, I used to have excruciating joint pain in the hips and shoulders that would only hit in the middle of cold nights. It would start when I would wake up and move the joint and last for about 30 seconds or so. In my final month of pregnancy, it happened 5-6 times per night in my hips and was so intense that I could not talk through it. It was worse than the labor pains I had and the pain following separation of my pubis symphysis when giving birth.
This weird hip and shoulder pain on cold nights completely went away when I went on Plavix and aspirin and comes back when I go off of these medications. Weird.
MTD
March 11, 2015 at 1:17 pm in reply to: LUPUS, NEUROPATHY, DERMATOMYOSITIS AND SYSTEMIC VASCULITIS… #5365Mog the DogParticipantHi MJ,
I have been tested for lupus too many times to count over the past 25 years but have never been diagnosed with it. I was suspected of having it the first time back in 1990 when I had chronic joint pain, a positive ANA, increased erythrocyte sedimentation rate, and false positive on the RPR (screening test for syphilis). The rheumatologist dismissed the idea of lupus, but due to the 8/9 on the Beighton scale and obvious joint laxity from head to toe, he diagnosed the EDS on the spot.
I now consistently have a high rheumatoid factor (typically >70 IU/ml) but no diagnosis of rheumatoid arthritis despite chronic inflammatory joint pain.
My new primary care physician suspects that vasculitis may underlie the joint pain, chronic weird head feelings and what appear to be simple partial seizures upon the transition from wakefulness to sleep. Vasculitis may also explain the chronic platelet hyperaggregability (platelet clumping) that underlies my 30+ years of vestibular dysfunction (rotational vertigo, low pitched tinnitus, and chronic disequilibrium). Plavix and aspirin do a great job of keeping the vestibular symptoms away but don’t do anything for the weird head stuff and chronic pain.
All that plus EDS hypermobility type.
MTD
Mog the DogParticipantHi Echo,
Sorry to hear that you are experiencing this new sort of pain. Sounds more like neuropathic than musculoskeletal pain to me based on your description, but a pain specialist would be the one to know for sure.
If the doctors you are currently seeing won’t take you seriously then it is time to find a new doctor. I know, easier said than done sometimes, but it is important that you avoid being harmed more than helped when you visit a doctor.
There are some recent scholarly articles available online that address the incidence of neuropathic pain in EDS that might be helpful in your quest for answers.
MTD
Mog the DogParticipantHi Pixielace!
Mog the Dog here. Welcome!
The thread you wanted to reply to is closed, so you need to open up a new thread to continue the discussion.
It sounds like you need a new doctor who knows something about EDS. I would recommend against trying to convince your current doctor to try to diagnose you. When a doctor dismisses EDS as no big deal, it’s time to find a new doctor.
Best wishes in your endeavors to get a viable treatment for your current symptoms. You are doing well to educate yourself and be your own best advocate.
MTD
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