Status
Not open for further replies.

debee861

New member
Joined
Apr 23, 2014
Messages
2
Reason
DX FIBRO
Diagnosis
11/2011
Country
US
State
CA
Hello,
I am new here, but also have a rare disease called SYRINGOHYDROMYALGIA. It means I have a cavity in my spinal cord. It is incurable.
Before any tests were done doctors were diagnosing me with CF and Fibro. It took another several years and many tests and still no diagnosis.
I was out with a friend and had done a lot of walking and dancing, when I collapsed because I could not feel my legs. I ended up in the emergency room in more pain than I have ever known in my life and the doctor ordered an MRI of my entire spinal cord and brain. An MRI is the only way of detecting the injury to the spinal cord. Have you had one?
The doctor came back and told me I had a rare disease and he had to call a specialist to find out how to treat it. He said they were giving me medicine through my Iv and soon I would feel better and be able to move again.
It was like a miracle.
Bad news was this hideous disease and it's symptoms. It took me a while, but I put everything together and realized that I had been injured by the anesthesiologist just before surgery giving birth to my daughter. It took eleven years to get diagnosed but it could have been right after I gave birth if not right when the injury occurred.
My question is, How many who have been diagnosed with Fibro have had any injury to their back or had an epidural or spinal block?
Look up the disease I mentioned and check the symptoms.
Yes I am saying I believe that the two are strongly linked and for good reason not being tied together. Think of the big picture and how it would affect the medical community if it were known that they were the one's causing this hideous disease and who gains by the many who have it?Have you had problems with your back or a siatica? What is the number of women diagnosed to men? Don't count on the medical community to bring this to the front at this point in time.
In countries that do not have law suits these issues are discussed in the open. Doctors and hospitals have no fear of being sued and do not stand to gain anything other than knowledge.
 
This is such a horror story! Thanks so much for sharing it. I'm so upset for you that doctors caused this issue!

I have never had kids, because so far I can't. My body is too weak to handle it. So there wouldn't be any issue like this for me.
 
Thanks a lot for sharing your story with us! I'm so sorry this happened with you tho. Your story gives me even more reasons not to trust the medical community, that's why I only go to the doctor when I feel really bad (sadly I feel awful nowadays and need to go to the doctor often). I have a long list of doctors to see this year.

When the time comes and I get to give birth... I will think it twice before getting the epidural! Specially after reading your story! So awful they caused this... just awful! I'm so glad you can still walk! Wish you could sue that awful doctor!
 
I'm so sorry you had to and are still going through this!
I unfortunately have fibro because of 2 car accidents... My epidural and nerve blocks came after my diagnosis....
The risks are very scary, but I am only in my 20s and will try whatever I can to improve my conditions....
Good luck!
 
I'm sorry too and I hope that you will feel better as soon as possible. Remember that it's always risky to live like this and I must wish you some good luck.
 
So my additional response is that if you had a car accident and it caused back problems, have you ever had an MRI of your entire spinal cord?

Yes, multiple mris. And I know what is wrong with my spine. The fibro is a co-diagnosis...
 
You must have suffered a lot. I can only hope that you will feel better.
 
Status
Not open for further replies.
Back
Top