January 15, 2015 at 7:04 pm #774
I am new to forums so please bare with me. I was diagnosed with EDS over a year ago (a long awaited diagnosis). I am not sure what symptoms I should list, I actually learn that things I experience are symptoms by reading other people’s posts. I am shaky, debilitating head aches, visual disturbances, severe brain fog, anxiety, weakness, ear pain, neck pain, nausea, bloody nose, and my symptoms are greatly exacerbated with rainy weather. Long story short I finally have a few medical professionals that are listening. I have an appointment with a Neurosurgeon at the end of this month to check for chiari. I am hoping to get some advice on questions to ask and tests I should have, possible medications that may help or even some other diagnosis like chiari I should be checked for? I am barely able to care for myself at this point so any advice is appreciated. 🙂January 18, 2015 at 11:09 am #5240BrendaParticipant
I hope that your Neurosurgeon helps you if you have Chiari. I have been diagnosed with Chiari 0 and cerebella tonsillar ectoptia but my Neurosurgeon doesn’t think that it is causing a problem with CSF flow even though the Radiologist said it was blocking the foramen major. I would be interested to know how you get on.
Now I have constant pain in my head, neck and left shoulder which stops after a while when I first lie down at night but I am woken sometime between 2-6 hours later by excruciating pain in my head and a feeling as though my life is at risk which makes me sit up for the rest of the night.
I am seeing a Neurologist this week and wonder whether anyone can help me ask the right questions. I believe that my autonomic nervous system may be tested and I know it’s not functioning properly because of the problems I have such as fast heart rate, insomnia, breathing problems, etc.
I haven’t been diagnosed with EDS yet because I am not hypemobile although other family members do have hypermobility. I’ve read Dr Diana’s book but am not sure whether to quote parts to the Neurologist because I don’t want to appear to be telling them how to do their job. At the same time, Dr Diana’s book has made me realise that I have so many of the symptoms she describes. Any ideas how to get an accurate diagnosis and making the Neurologist aware of EDS without them thinking you’ve just been self-diagnosing from the internet?
Best wishes and good luck
BJanuary 20, 2015 at 2:13 pm #5245
Thank you for responding. I too have constant pain in my head and neck and in my right shoulder. My pain becomes intolerable during the winter months and during barometric pressure changes. I lay down most of the time to control the pain and I keep my head slightly propped up. It feels like my head is going to explode from the pressure and the brain fog is terrible. I am bed ridden majority of the time from pain. I appreciate you sharing that you feel your life is at risk due to the pain. I feel that way all the time. I can’t imagine this much pain is not life threatening.
My only advice is to see a rheumatologist or an orthopedic doctor if you suspect EDS. A rheumatologist is the appropriate specialist for EDS so I would start there.
Definitely tell your neurologist about your symptoms and things you have read. From my own personal experience, I feel like the more info I can give, the closer I am to getting better.
My mother has so many symptoms of EDS but she’s not hypermobile. I feel like she has some variant.
I wish I could be more helpful, I hope you feel better soon.January 21, 2015 at 3:30 am #5251BrendaParticipant
Sorry to hear that you are in so much pain and hope you find an answer soon. Dr Diana’s book suggests a way forward and I see that you’ve downloaded it.
Did your Mum also get an EDS diagnosis? If so, I would be interested to know how they came to this conclusion if she is not hypermobile. I have seen a Rheumatologist who thought that, as I didn’t have hypermbility I couldn’t have EDS. He didn’t really take into account that it was in my family.
BJanuary 23, 2015 at 2:24 am #5254
I did start reading the book, I look forward to finishing its a helpful read so far.
My mother has not gotten an EDS diagnosis. She is extremely sensitive to everything she eats, smells, and touches. I understand that not everyone who has EDS is exactly the same. I am also not sure what my mother considers flexible and unfortunately there is no way to tell because of the extent of her injuries.
I hope you find answers, good luck.
- You must be logged in to reply to this topic.