Re: A diagnosis for my daughter?

Big Sister · ‎05-15-2010

If you can @hyacinth003, go to each dr's. appointment with her and keep notes when the dr. is talking. Also bring with you questiions that you have written down. We often can't recall everything the dr. said, so the notes are vital.

I am so sorry your dtr. is going through this with so much pain. She is lucky to have you, you are her patient advocate.

Noel7 · ‎03-09-2010

@Toppers3 wrote:

Hi @Noel7,

I'm so very sorry that your daughter is dealing with this painful syndrome.

It has been around for some time though, as I was first diagnosed with it many years ago, after an accident that I was in.

I think that getting a diagnosis for it probably just depends on what type of doctor that you see, and whether or not they are familiar with it.

I'm so sorry that your dear daughter had to see several different doctors first, before finally getting a diagnosis.

It can lead to Fibro., or someone can have it, and then can have Fibro. independently of it, or can have both together.

*********************************

Hi @Toppers3

I think what her team of doctors mean is that the condition is not an old established and well known illness/diagnosis. I can remember a time when Fibro was new and MDs were rolling their eyes over that one.

In fact, the article I put up for Hyacinth refers to many MDs being unaware of the Myofascial Pain Syndrome.

I'm really sorry to hear you suffer from it also.

Toppers3 · ‎10-25-2016

@Noel7 wrote:
@Toppers3 wrote:

Hi @Noel7,

I'm so very sorry that your daughter is dealing with this painful syndrome.

It has been around for some time though, as I was first diagnosed with it many years ago, after an accident that I was in.

I think that getting a diagnosis for it probably just depends on what type of doctor that you see, and whether or not they are familiar with it.

I'm so sorry that your dear daughter had to see several different doctors first, before finally getting a diagnosis.

It can lead to Fibro., or someone can have it, and then can have Fibro. independently of it, or can have both together.
*********************************

Hi @Toppers3

I think what her team of doctors mean is that the condition is not an old established and well known illness/diagnosis. I can remember a time when Fibro was new and MDs were rolling their eyes over that one.

In fact, the article I put up for Hyacinth refers to many MDs being unaware of the Myofascial Pain Syndrome.

I'm really sorry to hear you suffer from it also.

Hi @Noel7,

Ohhh o.k., I understand what you mean--what you're saying.

It can definitely be a complex-type of pain syndrome.

Thanks for your kind words.

I was referred to a Pain Management doctor by my primary care doctor. That's how I was diagnosed with it. Then, I developed Fibro.

You're right about the way that some doctors look at Fibro. Some still do tend to dismiss it, although I think that the thinking has begun to change on it, though.

Noel7 · ‎03-09-2010

@Toppers3 wrote:

Hi @Noel7,

Ohhh o.k., I understand what you mean--what you're saying.

It can definitely be a complex-type of pain syndrome.

Thanks for your kind words.

I was referred to a Pain Management doctor by my primary care doctor. That's how I was diagnosed with it. Then, I developed Fibro.

You're right about the way that some doctors look at Fibro. Some still do tend to dismiss it, although I think that the thinking has begun to change on it, though.

************************

@Toppers3

I'm really glad your pain management doctor knew about it! I read in the WP article above that it hits so many areas because the problem is with muscles contracting and referred pain.

My daughter's specialist told her meditation can help ease the pain and I was thrilled to hear it's been helping her.

hyacinth003 · ‎03-12-2010

@Noel7 wrote:
@hyacinth003

I have something for you to check out. After seeing six MD specialists for pain, my daughter finally has a diagnosis I want to share with you.

It's a newly discovered syndrome that can be helped. Maybe you can find a doctor who knows about:

Myofascial Pain Syndrome

She has met a new friend diagnosed with it in his legs, and I immediately thought of your daughter.

With your professional training you might be able to do some basic research online about it. Good luck!

Noel

ps My daughter wants you to have this informative article on the syndrome:

Myofascial pain syndrome often leaves doctors baffled and patients untreated

https://www.washingtonpost.com/national/health-science/myofascial-pain-syndrome-often-leaves-doctors...

Thank you so much. I will read/research anything that might help. Her childhood was very tough having an autistic disorder. Life isn't fair that she develops this later on!

Hyacinth

Noel7 · ‎03-09-2010

@hyacinth003 wrote:
@Noel7 wrote:
@hyacinth003

I have something for you to check out. After seeing six MD specialists for pain, my daughter finally has a diagnosis I want to share with you.

It's a newly discovered syndrome that can be helped. Maybe you can find a doctor who knows about:

Myofascial Pain Syndrome

She has met a new friend diagnosed with it in his legs, and I immediately thought of your daughter.

With your professional training you might be able to do some basic research online about it. Good luck!

Noel

ps My daughter wants you to have this informative article on the syndrome:

Myofascial pain syndrome often leaves doctors baffled and patients untreated

https://www.washingtonpost.com/national/health-science/myofascial-pain-syndrome-often-leaves-doctors...
Thank you so much. I will read/research anything that might help. Her childhood was very tough having an autistic disorder. Life isn't fair that she develops this later on!

Hyacinth

**************************

@hyacinth003

I understand, it isn't fair, you're right. I hope she can be helped. There is a treatment for this involving physical therapy.

Keep in mind, many doctors are not well informed on this, my daughter had to see six specialists before finding one who knew immediately what it was.

GOOD LUCK!

N.

Mindy D · ‎05-23-2010

MS? Lyme? How fast did the symptoms come on? Is the pain symmetrical? Could she have diabetic neuropathy? Cauda Equina Syndrome? Has she had a mylogram?