Mri images, unremarkable?
 

I was told recently that if you are already disabled on a disability income the medical professionals don't take you seriously. I also just found out that I probably have EDS, Ehlers Danlos Syndrome. The EDS would explain most of problems, also people with EDS may have worse symptoms then mris or exrays indicate. I don't believe that these images look unremarkable.
I would appreciate any feedback.
Redcat

By whom?

Doc

My neurologist said my mri was unremarkable. I have hired a physiotherapist who is supposed to be good at figuring out what is really wrong with you. He didn't think the mri images were unremarkable. He has treated people with EDS before. It would explain my physical history. I received the suggestion of EDS after my last appointment with the neurologist and don't have another appointment until next April. I mentioned EDS to my nurse practitioner, she said she had never heard of EDS and asked when my next appointment with the neurologist was.
I was considered doublejointed as a child then a person with hypermobile joints. I could put my legs behind my head one without much assistance. I still have greater than normal range of motion. I also have a lot more of the criteria.
On another note I had a bone density test yesterday. I have gone from 5 feet 7 inches (actually a hair under) to 5 feet 4 1/2 inches.
I am not prepared to say who told me about the inequity in medical treatment.
Redcat

Quote:

I am not prepared to say who told me about the inequity in medical treatment. Redcat

Dear Redcat,

When someone here asks "by whom", we are not usually asking for a specific name. The questions are usually related to...... was it a neurologist? was it a general practitioner? was it a chiropractor?

We do not use specific names of individuals or physicians. If we do wish to disclose that type of information, it is usually reserved for a PM ( private message).

By a medical professional who has seen this happen many times.
Redcat

Dear Redcat,

You appear to have mis-understood my comment. Doc Smith responded to your thread post, asking "by whom"? Your response was "you would rather not say". I was just trying to tell you that I did not think Doc was asking for a name.

I was not doubting you or your comment...... I was just trying to clarify something that I guess was not my place to clarify in the first place.

I was not asking for a response to the "questions" in my comment. I was just using questions that I thought would indicate my point that a person's name was not being elicited. My interpretation of Doc's question "by whom" was asking what specialty but it is not for me to act as interpreter. I am sorry I attempted to do that.

My apologies to both you and Doc. I will just stay out of it. None of my business. I did not mean to speak for Doc.

I am sorry if you thought I was offended, I was not. I appreciate any input. I keep my answers brief because it hurts to type. I was not specific because I don't have the person's permission to use their name. I live in an area where if I said what professional told me that every one would know who I was referring to. I am involved in a law suit due to the mva that caused my injuries. I just want to find out what is wrong with me and try to regain as much of my abilities and independence as possible
Thank you for your time,
Redcat

Hi Redcat,

Thanks for your post. Yes, I was afraid that I had offended you and/or Dr. Smith and that was definitely NOT my intent.

I certainly understand and agree with you about not wanting to disclose personal or sensitive information.

We also understand your desire for answers and hopefully solutions from the medical professionals from which you seek assistance. It is very difficult to lose our independence and abilities. Having answers makes dealing with it a bit easier. It is always better to know what you are fighting in my opinion. I spent years being undiagnosed with one of my conditions and just getting a diagnosis was a huge benefit.

Wishing you the best.

All I meant was... Well, has anyone ever told you something that they "heard" or "were told" that you wondered about as being accurate?

It's one thing if your doctor, whom you trust and respect, tells you something s/he has superior knowledge of. It's something else if it's some lay person you met casually/socially, who may be repeating a half-truth rumor, urban myth, etc. based on who-knows-what.

People see, hear, read, and/or are told things all the time by television, or some bozo on the internet (self included), etc. that aren't always... entirely accurate. People also post things here that they've heard, or read/seen elsewhere, and without any further information, it can be difficult to separate the wheat from the chaff (so to speak).

I'm sorry I was previously abrupt; I was pressed for time that evening, and wanted to get some clarification/prompt some discussion to establish more facts/information for the benefit of any/everyone who may read this thread.

It was nothing more than asking for more general information. No, I certainly wasn't asking for a specific name or any identifying information.

Doc

Hi Doc,
The persons who have told me this are medical professionals . One has since retired and was my rheumatologist. I also used to work as an R.N.A. I guess the equivalent would be L.P.N. and saw this first hand.
Why Doctors lie is a very long thread on another website.
The one person who told me could read mri images (as well as any non radiologist ). They had multiple patients, the one who was a farmer's wife had the worst symptoms and more showing up on her mri than the lawyer and accountant who had surgery. The farmer's wife was told she would just have to deal with the pain and suck it up.
I guess I am ranting, I apologize it just makes me angry when I and other people with disabilities don't get taken seriously. Also the poor quality of my mri images and report have been pointed out to me.
Redcat

Hi Redcat,

Thanks for clarifying. Have you had any discussions about this on the Social Security Disability and/or Layoffs, Unemployment and Worker's Compensation forums?

Regarding the neurologist, from what you've said, it sounds like s/he may not be a good doctor for you. Is there another neuro—more experienced with EDS—that you could see instead?

I can't really comment on your imaging because I don't know how to read MRIs except for the very few things I've picked up here from others—mostly dealing with discs & spacing.

I've had some crappy experiences with doctors, as I suspect many people have. Some I've "fired" (not bothered to schedule a follow-up appt.) after the first visit; others it's taken longer, but the result has been the same.

It's taken a long time to build the team I have now, and I think it's been worthwile.

Doc

Hi Doc,
No I haven't talked with those groups. I live in Canada and its not always easy to switch specialists. Be that as it may I will do my best to get a new neuro.
It sounds like there is a lot more awareness about EDS in the United States than here in Canada. It is such a relief to finally have some answers.
Happy Thanksgiving.
Redcat